A Georgia resource guide for individuals with autism and their families / [by Michelle Schwartz]

A Georgia Resource
Guide
For Individuals with Autism and Their Families
This Guide was made possible by a grant from the Department of Human Resources
Division of Mental Health, Mental Retardation & Substance Abuse And
The Family Support Project of the Governor's Council on Developmental Disabilities 2 Peachtree Street, NW, Atlanta, GA 30303-3142 404/657-2126 FAX 404/657-2132
Toll Free: 1-888-275-4233http//:www.dhr.state.ga.us

A Resource Guide for Individuals with
Autism and Their Families
Table of Contents
A. Defining Autism 1. The Autism Spectrum.............................................................. DSM IV Criteria.................................................................... 2. The Behavioral Continuum..................................................... 3. Current Interventions in Autism Lovaas................................................................................ TEACCH.............................................................................. PECS................................................................................... Greenspan.......................................................................... Social Stories..................................................................... Inclusion............................................................................. 4. The Medication Continuum..................................................... 5. The Sensory Continuum.......................................................... 6. The Communication Continuum............................................. Communicating with Individuals with Autism................. Functional Communication Assessment.........................
B. Defining Family Supports 1. What is Family Support?......................................................... DHR Guidelines.................................................................. 2. Questions to Ask Provider Agencies.....................................
C. Understanding Community Supports 1. Accessing Regional Systems................................................. Regional Board Provider Information............................... 2. Accessing State Systems Support Service Descriptions........................................... How to Begin......................................................................
D. Collaborating with Community Providers Transition Planning............................................................. Crisis Intervention............................................................... Team Building....................................................................
E E. Community Autism Supports for Individuals with Autism Statewide Resources for Individuals with Autism
1. DHR Babies Can't Wait..............................................................

Emory Autism Resource Center....................................... Judevine............................................................................. The Marcus Institute.......................................................... Albany ARC........................................................................ MARC.................................................................................. May South...........................................................................
2. Developmental Disabilities Network IHDD.................................................................................... Governors Council on Developmental Disabilities......... Georgia Advocacy Office..................................................
F. Federal Funding Sources............................................................ Medicaid ............................................................................. Medicare.............................................................................. Social Security Disability................................................... Supplemental Security Income.........................................
G. Autism Related Resources Organizations..................................................................... Support Groups.................................................................. Autism Resource Centers.................................................. Autism Training Centers.................................................... Speech-Language Pathologists........................................ Occupational Therapists................................................... Recreation/Leisure Services............................................. Supported Employment..................................................... Dentists............................................................................... Pediatricians....................................................................... Psychologists.....................................................................
H. References Related to Autism Access Autism.................................................................... Autism Publications........................................................... Books..................................................................................
I. Laws Affecting Disability Services....................................
J. Glossary.......................................................................................

THE AUTISM SPECTRUM
What is Autism?
Autism is a developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects functioning of the brain, autism and its associated behaviors occur in approximately 15 of every 10,000 individuals.
Autism is four times more prevalent in boys than girls and knows no racial, ethnic or social boundaries. Family income, lifestyle and educational levels do not affect the chance of autism's occurrence.
Autism interferes with the normal development of the brain in the areas of reasoning, social interaction and communication skills. Children and adults with autism typically have deficiencies in verbal and non-verbal communication, social interactions and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. They may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resist any changes in routines. In some cases, aggressive and/or self-injurious behavior may be present.
It is conservatively estimated that nearly 400,000 people in the U.S. today have some form of autism. Its prevalence rate now places it as the third most common developmental disability, more common than Down Syndrome. Yet the majority of the public, including many professionals in the medical, educational, and vocational fields are still unaware of how autism affects people and how to effectively work with individuals with autism.
What Causes Autism?
Medical researchers are exploring different explanations for the various forms of autism. Although one specific cause of autism is not known, current research links autism to biological or neurological differences in the brain. In some families there appears to be a pattern of autism or related disabilities, which suggest there may be a genetic basis to the disorder, although at this time no one gene has been directly linked to autism.

Several older theories about the cause of autism have now proven false. Autism is not a mental illness. Children with autism are not unruly kids who choose not to behave. Bad parenting does not cause autism. Furthermore, no known psychological factors in the development of the child have been shown to cause autism.
Is There More Than One Type of Autism?
Autism is often referred to as a spectrum disorder, meaning that the symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviors, children and adults can exhibit any combination of the behaviors in any degree of severity. Two children, both with a diagnosis of autism, can act very differently from one another.
Professionals utilize a diagnostic handbook, the Diagnostic and Statistical Manual now in its fourth edition (DSM-IV). Several autismrelated disorders are grouped under these broad headings (1) "Pervasive Developmental Disorder" or PPD; (2) "PPD-NOS" (pervasive developmental disorder, not otherwise specified); (3) "Asperger's Syndrome" and (4) "Rhett's Syndrome".
The complete DSM-IV criteria are provided within this guide. These four diagnoses are used differently by professionals to describe individuals who manifest some, but not all, of the autism characteristics. What is most important to understand is that whatever the autism diagnosis, children are likely to benefit from similar approaches to education and treatment.
How is Autism Diagnosed?
T here are no medical tests for diagnosing autism. An accurate diagnosis must be based on observations of the child's communication, behavior and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, a doctor may complete various medical tests to rule out other possible causes.

Diagnosis is difficult for a practitioner with limited training or exposure to autism since the characteristics of the disorder vary so much. Locating a medical specialist or a diagnostician who has experience with autism is most important. Ideally, a child should be evaluated by a multidisciplinary team, which may include a neurologist, psychologist, developmental pediatrician, speech-language therapist, learning consultant or other professionals knowledgeable about autism. Several diagnostic tools have been developed over the past few years to help professionals make an accurate autism diagnosis:
CHAT (Checklist for Autism in Toddlers) CARS (Childhood Autism Rating Scale) PIA (Parent Interviews for Autism) GARS (Gilliam Autism Rating Scale) BRIAC (Behavior Rating Instrument for Autistic & other
Atypical Children)
Abrief observation in a single setting cannot present a true picture of an individual's abilities and behaviors. At first glance, the person with autism may appear to have mental retardation, a behavior disorder, or even problems with hearing. However, it is important to distinguish autism from other conditions, since an accurate diagnosis can provide the basis for building an appropriate and effective educational treatment program.
What are the Characteristics?
What are People with Autism Like?
Children with autism often appear relatively normal in their development until the age of 24-30 months when parents may notice delays in language, play or social interaction.
The following areas are among those that may be affected by autism: Communication: language develops slowly or not at all; use of words without attaching the usual meaning to them; communicates with gestures instead of words; short attention spans; Social Interaction: spends time alone rather that with others; shows little interest in making friends; less responsive to social cues such as eye contact or smiles; Sensory Impairment: unusual reactions to physical sensations such as being overly sensitive to touch or under-responsive to pain; sight, hearing, touch, pain; smell or taste may be affected to a lesser degree; Play: lack of spontaneous or imaginative play; does not imitate others actions; doesn't initiate pretend games; Behaviors: may be overactive or very passive; throw frequent tantrums for no apparent reason; may perseverate on a single item,

idea or person; apparent lack of common sense; may show aggressive or violent behavior or injure self.
There are great differences among people with autism. Some individuals are mildly affected and may exhibit only slight delays in language and greater challenges with social interactions. They may have average or above average verbal, memory or spatial skills, but find it difficult to be imaginative or join in a game of softball with their friends. Others are more severely affected and may need greater assistance in handling day-to-day activities, like crossing the street or making a purchase.
Contrary to popular belief, many children and adults with autism do make eye contact, show affection, smile and laugh, and show a variety of other emotions, but in varying degrees. Like other children, they respond to their environment in positive and negative ways. The autism may affect their range of responses and make it more difficult to control how their body and mind react. Individuals with autism live normal life spans and their behaviors may change or disappear over time.
W hile no one can predict the future, we do know that some adults with autism live and work independently in the community, while others depend on the support of family and professionals. Adults with autism can benefit from vocational training to provide them with the skills needed for obtaining jobs in addition to social and recreational programs. Adults with autism may live in a variety of residential settings ranging from independent home or apartment to group homes, supervised apartment settings or living with other family members.
Individuals with autism may have other disorders which affect the functioning of the brain; i.e., epilepsy, mental retardation, or genetic disorders such as Fragile X Syndrome. About two-thirds of people diagnosed with autism will test in the range of mental retardation. Approximately 25-30% may develop a seizure pattern at some period during life.
Is There a Cure for Autism?
Our understanding of autism has grown tremendously since it was first described in 1943. Some of the earlier searches for "cures" now seem unrealistic in terms of today's understanding of brain-based disorders. To cure means "to restore to health, soundness or normality." In the medical sense, there is no cure for the differences in the brain which result in aut ism.

However, we are finding better ways to understand the disorder and help people cope with the various symptoms of the disabil ity. Some of these symptoms may lessen as the child ages; others may disappear altogether. With appropriate intervention, many of the autism behaviors can be positively changed even to the point that the child or adult may appear to the untrained person to no longer have autism. The majority of children and adults will, however, continue to exhibit some symptoms of autism to some degree throughout their entire lives.
What are the Most Effective Approaches to
Supporting Individuals with Autism?
Because of the spectrum nature of autism and the many behavior combinations which can occur, no one approach is effective in alleviating symptoms of autism in all cases. Various types of therapies are available; including, behavior modification, speech-language therapy, sensory integration, vision therapy, music therapy, auditory training, medications and dietary interventions, among others.
Experience has shown that individuals with autism respond well to a highly structured, specialized education and behavior modification program tailored to the individual needs of the person. A well designed intervention approach will include some level of communication therapy, social skill development, sensory impairment therapy and behavior modification, at a minimum, delivered by autism trained professionals in a consistent, comprehensive and coordinated manner. The more severe challenges of some children with autism may be best addressed by a structured education and behavior program that contains a one-to-one teacher to student ratio or small group environment.
Students with autism should have training in vocational skills and community living skills at the earliest possible age. Learning to cross a street safely, to make a simple purchase or to ask for assistance when needed are critical skills and may be difficult even for those with average intelligence levels. Tasks that enhance the person's independence, give more opportunity for personal choice or allow more freedom in the community are important.

T o be effective, any approach should be flexible in nature, rely on positive reinforcement, be re-evaluated on a regular basis and provide a smooth transition from home to school to community environments. A good program will also incorporate training and support systems for the caregivers as well.
As a result of appropriate and individualized services and programs, even individuals with severe disabilities can be taught skills to allow them to develop to their fullest potential.
The Behavioral Continuum
I t is important to understand that autism is a syndrome with varying types and degrees of symptoms or characteristics. Each characteristic tells us something about that person's barrier to understanding spoken and unspoken language. Some of the behaviors include, but are not limited to:
Difficulty learning through social interactions Difficulty with imitation Difficulty learning from peers Difficulty "reading" facial and gestural cues that others might expect the
person to understand Difficulty processing visual and/or auditory information Engaging in repetitive behaviors to the exclusion of novel activities Engaging in self-injurious, tantrum or aggressive behaviors
W hen a person with autism demonstrates behaviors that are challenging, it is essential that family members and professionals should look at the individuals unique profile to determine which particular intervention approach best fits their needs at that time. It is also important to understand there is no known "cure for autism" and the challenges that arise with this disorder. However, there are many new and creative approaches to increase and improve behavioral control, independent living skills and social interactions.
How much progress each person with autism makes is influenced by his or her specific characteristics, intellectual capacity and individual learning style. Six approaches in current practice for supporting behavioral challenges will be described in detail.
At the core of all interventions should be a process for designing individualized positive behavioral approaches. These approaches or plans should include modifications to the environment, teaching the individual skills needed to replace the problem behaviors, effective management of consequences and the promotion of positive lifestyle changes.

W e need to be aware of the purposes that behaviors may serve. For example; is it a method to avoid a situation; does the individual not feel well; does the individual not have the skills to communicate their wants, needs, preferences and choices? It is imperative that we remember all behaviors are "meaning-full".
Specific contact information for accessing these interventions within the state is listed in the resource section of this guide.
Autism Treatments
CURRENT INTERVENTIONS IN AUTISM: A BRIEF ANALYSIS
THE LOVASS METHOD of supporting individuals with challenging behaviors is also known as Discreet Trial (DT), Intensive Behavior Intervention (IBI), Applied Behavior Analysis (ABA). Discreet Trial is one of the earliest forms of behavior modification.
G OALS: To teach the child how to learn by focusing on
developing skills in attending, imitation, receptive/expressive language, preacademics, and self help.
HOW IMPLEMENTED: Uses ABC model; every trial or task given to the child consists of: antecedent a directive or request for child to perform an action, behavior - a response from the child that may include successful performance, non-compliance, no response, consequence - a reaction from the therapist, including a range of responses from strong positive reinforcement to faint praise to a negative "No!", pause - to separate trials from one another (inter-trial interval).
REPORTED OUTCOMES: First replications of initial research
reporting gains in IQ, language comprehension and expressions, adaptive and social skills.
ADVANTAGES OF APPROACH: Recognizes
need for one-to-one instruction; utilizes repetitions of learned responses until firmly imbedded; tends to keep child engaged for increasing periods of time; effective at eliciting verbal production in select children; is a "jump start" for many
children, with best outcomes for those in mild-to-moderate range.

C ONCERNS WITH APPROACH: Heavily promoted as THE
approach for autism in absence of any comparative research to support claim; no differentiation for subtypes when creating curriculum; emphasizes compliance training, prompt dependence; heavy focus on behavioral approach may ignore underlying neurological aspects of autism including issues of executive
function and attention switching; may overstress child and/or family; cost reported as high as $50,000 per child per year; prohibits equal access.
ERRORS TO AVOID: Creating dependency on one-to-one;
over-stressing child or family; interpreting all behaviors as willful rather that neurological manifestations of syndrome; ignoring sensory issues or processing difficulties; failing to recognize when it is time change approaches.
T HE TEACCH METHOD for supporting individuals with challenging behaviors stands for Treatment and Education of Autistic and related Communication-handicapped Children. There are over 32 years of empirical data on the efficacy of the TEACCH approach. This method includes parents as co-therapists; recognizes need for supports from early childhood through adulthood; main focus is on autism rather than behavior.
G OALS: To provide strategies that support person throughout
the life-span; facilitate autonomy at all levels of functioning; can be accommodated to individual needs.
HOW IMPLEMENTED: This method is clearly organized using structured modified environments and activities. Its emphasis is on visual learning modalities and uses functional contexts for teaching concepts. The curriculum is based on individual assessment. It uses structure and predictability to promote spontaneous communication.
REPORTED OUTCOMES: gains in function and development;
improved adaptation and increase in functional skills; learned skills generalized to other environments; North Carolina reports lowest parental stress rates and lowest rate of request for out-of-home placement, and highest successful employment rates.

ADVANTAGES TO APPROACH: TEACCH is a dynamic model
that takes advantage of and incorporates research from multiple fields; model does not remain static; anticipates and supports inclusive strategies; compatible with PECS, Floor Time, Occupational Therapy, Physical Therapy, selected therapies; addresses subtypes of autism, using individualized assessment and
approach; identifi es emerging skills with highest probability of success; modifiable to reduce stress on chi ld and/or family.
C ONCERNS OF APPROACH: There is a belief that TEACCH
"gives in" to autism rather that fighting it; seen by some as an exclusionary approach that segregates children with autism; does not place enough emphasis on communication and social development; independent work centers may isolate when there is a need be with other children to develop social skills.
ERRORS TO AVOID: Failure to offer sufficient training,
constancy, and follow-up training to teachers for programs to be properly implemented; treating TEACCH as a single classroom approach rather that a comprehensive continuum of supports and strategies; expecting minimally trained teacher to inform and train all other personnel in TEACCH approach; failing to work
collaboratively with parents.
P ECS stands for Picture Exchange Communication System and is derived from the need to differentiate between talking and communicating. This approach combines in-depth knowledge of speech therapy with understanding of communication where student does not typically attach meaning to words and lack of understanding of communication exists. It is highly compatible with TEACCH.
G OALS: To help the child spontaneously initiate
communicative interaction; help the child understand the function of communication; develop communicative competency.
HOW IMPLEMENTED: This approach
recognizes that young children with autism are not strongly influenced by social rewards. Training begins with functional acts that bring the child into contact with rewards; physically assisted exchanges; proceeds through a hierarchy of eight phases; and
requires an initial two-to-one ratio.

REPORTED OUTCOMES: Pyramid Educational Consultants
report incoming empirical data supporting: increased communicative competency among users (children understanding the function of communication); increasing reports of emerging spontaneous speech.
ADVANTAGES OF APPROACH: This approach helps to
get language started; addresses both the communicative and social deficits of autism; well-suited for pre-verbal and non-verbal children AND children with a higher Performance IQ than Verbal IQ; semantics of PECS more like spoken language than signing.
CONCERNS WITH APPROACH: This approach may suppress spoken language (evidence is to the contrary).
ERRORS TO AVOID: Failure to strictly adhere to the teaching
principals in Phase I; tendency to rush through Phrase I or to use only one trainer; providing inadequate support or follow-up for teacher after attending two-day training; training only one person in approach rather than all classroom personnel; inconsistently implementing in classroom.
THE GREENSPAN approach of supporting individuals with
autism is also know as "Floor Time," or the DIR (Developmental IndividualDifference, Relationship-Based) Model. It targets emotional development following a developmental model and depends on informed and acute observations of the child to determine current level of functioning. This approach uses a childcentered focus which builds from the child. "Floor Time" is only
one piece of a three-part model that also includes spontaneity along with semistructured play, and motor and sensory play.
G OALS: To target personal interactions to facilitate mastery of
developmental skills; helps professionals see the child as functionally integrated and connected. It does not treat in separate pieces for speech development, motor development, etc.

HOW IMPLEMENTED: This approach teaches in interactive
contexts; addresses developmental delays in sensory modulation, motor planning and sequencing, and perceptual processing; is usually done in 20-minute segments followed by 20-minute breaks; each segment addresses each of the above-identified delays.
REPORTED OUTCOMES: This approach teaches parents how
to engage child in happier, more relaxed ways; and, hypothetically, lays stronger framework for future neurological/cognitive development.
ADVANTAGES OF APPROACH: This
approach addresses emotional development in contrast to other approaches which tend to focus on cognitive development. It avoids specific drilling in deficit areas, which feeds the child's frustration and highlights
inadequacies, and is a non-threatening approach that helps to turn the child's actions into interactions.
C ONCERNS WITH APPROACH: This approach does not focus
on specific areas for competency. There is no research to support the efficacy of this approach for children with autism. It is based on hypotheses, not research, and is a more passive approach.
ERRORS TO AVOID: Attempting to implement
this approach without training or professional oversight; taking the lead; trying to get the child to do what YOU think he should be doing; not allowing adequate time to complete a task or activity; attempting to implement in midst of ongoing activities for
other children.
INCLUSION initially intended for children with mental retardation
and disabilities other that autism; sociological, educational, and political mandates in contrast to psychology as root source for other approaches; inclusion defined in three federal laws - PL 94-142, REI and the Individuals with Disabilities Act of 1990 (IDEA).

G OALS: educate children with disabilities with neurotypical
(NT) children to the maximum extent possible; educate children with disabilities in the chronological setting they would be in if they had no disability and they lived at home; does not apply separate educational channel s except under specific circumstances.
HOW IMPLEMENTED: children with autism typically placed in
inclusive settings with a one-to-one aide; curriculum modified to accommodate to specific learning strengths and deficits; requires team approach to planning; approach may be selective inclusion (by subject matter or class), partial inclusion (1/2 day included, 1/2 day separate instruction), or full radical inclusion with no
exceptions.
REPORTED OUTCOMES: in certain circumstances, some
children with autism can survive and even become more social in classrooms with NT peers; benefits children who cognitively match classmates.
ADVANTAGES OF APPROACH: more
opportunities for role modeling and social interaction; greater exposure to verbal communication; opportunities for peers to gain greater understanding of, and tolerance for, differences; greater opportunities for friendships with typically developing peers.
C ONCERNS WITH APPROACH: automatic inclusion violates
spirit and letter of IDEA; opportunities for successful inclusion begin to plateau by end of third grade as work becomes more abstract and faster paced; increasing use of language-based instruction puts students with autism at a great disadvantage; sensory and processing difficulties tend to be insufficiently accommodated;
regular education setting not necessarily best learning environment for students with autism; teachers and students in inclusion classrooms are typically ill prepared to receive student.
ERRORS TO AVOID: providing insufficient training, preparation,
information, and support to personnel; placing student in settings where level of auditory and visual stimulation is typically too intense; assigning student work in which cognitive demands exceeds student's comprehension; depending on support of a one-to-one aide; maintaining placement in face of frequent or severe disruptive
behaviors; focusing on academics to detriment or exclusion of functional competencies.

SOCIAL STORIES, also know as Social Scripts, were developed by Carol Gray in 1991 initially to help a student with autism understand rules of a game. This was further developed to address understanding subtle social rules of "neurotypical" culture and addresses "Theory of Mind" deficits (the ability to take the perspective of another person).
G OALS: To clarify social expectations for students with Autism
Spectrum Disorder; address issues from the student's perspective; redefine social misinterpretations and provide a guide for conduct or self-management in specific social situations.
HOW IMPLEMENTED: The stories or scripts
are specific to the person addressing situations which are problematic for that individual. Social Stories are typically comprised of three types of sentences; perspective, descriptive and directive; types of sentences follow a rationale for frequency
of inclusion in the Social Story. The Social Story can be read TO or BY the person with autism and should be introduced far enough in advance of situation to allow multiple readings; but, especially just before the situation is to occur.
REPORTED OUTCOMES: There is usually stabilization of behavior specific to the situation being addressed; reduction in frustration and anxiety of students. Improved behavior is seen when approach is consistently implemented.
ADVANTAGES OF APPROACH: Stories are developed
specifically to address autistic social deficits and tailored to individual and specific needs. It is time and cost efficient/flexible.
C ONCERNS WITH APPROACH: Supportive
data is anecdotal rather than empirical. Benefit depends on skill of writer and writer's understanding of autism; as well as, writer's ability to take an autistic perspective.
ERRORS TO AVOID: Including too many directive sentences in
proportion to perspective and descriptive sentences; stating directive sentences in inflexible terms (e.g., "I will do____" rather that "I will try to____"); writing above the person's cognitive language; not being specific enough in describing either the situation or desired behavioral response.

The Medication Continuum
Over the past 10 years there has been an increase in pharmacological research associated with symptoms and behaviors exhibited by individuals with autism. These medications have been used to treat hyperactivity, impulsivity, anxiety, obsessive-compulsive acts, self-injurious behaviors, repetitive motor behaviors, depression, mood swings and insomnia. Most of these clinical characteristics are considered to be associated with the autism spectrum. It is imperative to have available skillful and consistent clinical medical oversight of all drug regimens.
T he ultimate goal of medication is to help the individual with autism take advantage of learning. Medication should be viewed as only one part of a treatment plan. A variety of medications and dosages may be utilized throughout a lifetime. Physicians must be provided with accurate descriptions of behaviors and symptoms based on information provided by family members, teachers, other professionals and persons who know the individual with autism. Dosages should start low and observations maintained concerning the effect of these medications.
F our major groups of medications will be discussed including general indications and side effects.
1. Neuroleptics are also called anti-psychotic medications. They are effective in treating severe anxiety, agitation and aggression, hyperactivity, self-stimulatory behaviors and withdrawal.
These drugs include Haldol, Mellaril*, Clozaril, Zyprexa, Resperdal, Seroquel, and Stelazine. Side effects include sedation, tremors, stiffening of the muscles and tardive dyskinesia. Dyskinesia is a syndrome that can cause possible irreversible, involuntary movements. *There is currently a warning issued by Norantis Pharmaceuticals advising discontinuing use of this drug due to possible cardiac problems. Use of Resperdal, Zyprexa or Seroquil has demonstrated fewer side effects.
2. Anti-depressant medications are referred to as selective serotonin reuptake inhibitors (SSRI's) and may be prescribed because of their effectiveness in treating obsessive-compulsive behavior. These repetitive behavior patterns may be associated with anxiety, tantrums, and aggressive behavior toward self or others and can interfere with learning and participating in life activities.
The drugs include Anafranil, Luvox, and Prozac. Studies report these drugs may reduce the frequency and intensity of repetitive behaviors, ritualized behaviors, aggression and tantrums. Side effects may include hyperactivity,

increase in impulsive behavior, sleep disturbance, dry-mouth, dizziness, constipation and heart rhythm changes.
Other types of anti-depressant medications have not been researched extensively for use with individuals with autism. These include Norpramin, Tofranil, Pamelor, Elavil, and Wellbutrin.
3. Anti-anxiety medications including Buspar, Valium, Klonapin, Ativan and Xanax also have not been well researched. They are sometimes used as an adjunct to other medications.
4. Stimulant and other ADHD medications have not been studied fully in individuals with autism. These medications may improve focus, and decrease impulsivity and hyperactivity; but, their use is frequently limited by an increase in repetitive behaviors, perserverations and irritability. These medications are more useful with individuals who have a diagnosis of Asperger's Syndrome.
A second group of ADHD medications include Catapress and Texnex. These have a less direct effect on focusing behaviors; but, may be useful for treating hyperactivity, impulsivity and sleep disturbances.
5. Mood Stabilizers are used for treating intense, rapid moods shifts, outbursts and episodic aggressive behavior. These include Depakene, Depakote, Tegretol, Neurotin, Lamictal and Lithum. These medications are most commonly used with individuals who have a diagnosis of bipolar disorders.
Side effects vary from mild to potentially severe. Blood monitoring is required for many of these medications.
It is important to remember that there are no medications that directly improve cognitive deficits, language difficulties or impairment in abstract thinking and social understanding. However, medications may enable individuals with autism to better handle educational, behavioral or other interventions that are use.
Adap ted fro m: T he "A dvo cate" , The news letter o f the Au tism S ociety of Am erica. Nov emb er-Dec emb er 2000 Volum e 33, No . 6

The Sensory Continuum
E ach of us has a sensory system which uses receptors to pick up
information that is then processed by the brain. There are three sensory systems that not only must work properly but; also, together, so that we can successfully interact with our environment.
T he tactile sense or sense of touch makes it possible to determine if something is hot or cold, rough or smooth, etc. The vestibular sense coordinates the movement of the eyes, head and body. It allows the individual to maintain balance. This sensory system also maintains muscle tone and coordination. The sense of proprioception uses information from the muscles and joints to give awareness of body position.
Sensory integration problems can look different in each individual and can change over time. The following symptoms may indicate that a person with autism has sensory integration difficulties:
Overly sensitive to touch, movement, sights or sounds Under-reactive to sensory stimulation Activity level that is unusually high or low Coordination problems Delays in speech or language skills Delays in motor skills or academic achievement Poor organization A poor self concept
Sensitivity to clothing, food and temperature may be observed. Difficulty with motor planning and self-care skills may be noted. It is important to maintain accurate and complete information on how the person with autism interacts with his/her environment. Evaluations should be obtained from occupational therapists, speech language therapists and physical therapists that have worked with and been trained in diagnosing and providing therapeutic interventions for individuals with autism. These professionals can provide you with activities that will support the specific area of deficit.
Integrating sensory information is not an "all or nothing" process. Each of us has some difficulty processing sensory input at some time in our lives. Being aware of how we process information will help us better understand the difficulties some individuals with autism face on a day-to-day basis.

The Communication Continuum
A ny act of communication involves a combination of knowledge.
Communication has a specific form, serves a particular function, expresses certain meanings and occurs in a specific context. Individuals with autism frequently exhibit deficits in relation to the social, cognitive, and language comprehension and production aspects of communication

Communication is the act of getting a message across to another person and interpreting messages someone else gives you. We communicate not only with words, but; also, with body language, vocal intonation, and changes in facial expression and gestures. Individuals with autism frequently do not seem to understand the power of communication; in that, by communicating they can influence the behaviors of others within their environment. Individuals with autism often seem unable to analyze language into its relevant parts and have difficulty relating words to objects and the events they represent and/or generalize learning from one situation or context to another. Verbal communication skills are frequently echolalic with odd voice qualities, pronoun reversals and idiosyncratic use of words.

Communicative functions refer to the intent or purpose. The functions we most frequently use communication for include: requesting, gaining attention, rejection/refusal, commenting, giving information, seeking information, expressing emotions and social greetings. Communication forms can include any one of the following:

Motoric

direct manipulation of a person or object

Gestural conventional or miming body movements/actions

Vocal

use of non-conventional sounds to communicate

Pictoral

use of pictures and/or picture symbols of objects, events, or relationships

Written

use of printed word or phrases to communicate

Sign

use of American Sign Language

Verbal

use of conventional oral words or phrases.

T he attached Communication Home Assessment will assist
professionals and family members to better determine what functions and forms of communications the individual is using successfully in various settings. Communication assessment by qualified professionals (Speech Language Pathologists {SLP}) is crucial in selecting, supporting and teaching objectives in the home, school and/or
work settings. This assessment should consist of formal and informal tasks including observations in a natural context. Use of audiotapes or videotapes is an excellent method to document functional communication skills. An assessment should identify the range of behaviors used for communication and the ability of the individual to repair communication breakdowns.
Communication intervention programs should always emphasize successful communicative interaction based on both developmental and functional criteria. For example, an appropriate goal for any individual may be to use communication signals to request specific social games. You would not use "peek-a-boo" for a preverbal 12-year-old individual. The emphasis of intervention programs should be placed on the functional use of language and communication in all natural settings. Natural environments should be designed to foster communicative interactions that are balanced and reciprocal. Interventions should be targeted to improve interaction styles with significant others (i.e., learning to wait, etc.) The support of challenging behaviors and emotional arousal should be fully integrated within communication programs by developing visual supports, (i.e., picture symbols) for maintaining schedules/routines and communicating medical and emotional concerns.
It is important to remember that language and communicative interactions can be adapted to an age appropriate level for any individual with autism. Environments and activities should be structured in a predictable and understandable manner (use of visual supports) and opportunities for decision making and social control should be provided. It is not necessary for individuals with autism to obtain conventional communication skills. It is necessary for individuals with autism to have opportunities for communication with others who understand and respect those unconventional and alternative methods.
As we acknowledge that every individual has the right to communicate in every setting, we must also acknowledge the necessity of developing consistent and dependable communication systems. Alternative and augmentative communication (AAC) systems provide support for those individuals who cannot speak or whose speech is limited or difficult to understand. Individuals without effective and dependable communication systems may have more anxiety and exhibit challenging behaviors because they have fewer opportunities to participate within their communities.

It is important to select a primary communication system based on the individuals spontaneous skills, interest and motor abilities. A speech language pathologist specializing in assessing and developing AAC systems along with an autism specialist are essential in assisting you determine the most appropriate primary communication system. Many individuals learn to incorporate a variety of systems for different situations.
Any ACC system used should be matched to the individuals ability level to scan and direct attention. The individuals should be able to understand the picture or word symbols and be able to physically manipulate the system. To be effective the AAC system should be: portable durable easy to use easy to adapt and/or expand and capable of delivering a clear message as quickly as
possible.
It is important to make certain that these communication systems are updated and adapted as the individuals needs and skill level changes. Ultimately, accessibility to communication opportunities is the key issue for any individual with autism.
Communicating with Individuals

Who Have Autism
Autism is a neurological condition that causes sensory and communication problems. Some people with autism can talk, but have difficulty expressing ideas and answering questions. Others cannot talk at all but can answer questions by pointing to pictures or words. Many can read and some can write their answers.
Individuals with autism may be overwhelmed and distracted by noise, lights, crowding, and being rushed. They are easily confused, highly anxious and often in a state of near panic. If they do not understand some part of a question or expectation they may not respond at all. If they seem unresponsive to requests or communicative interactions it is likely that they do not totally understand the expectations.
It is important to rem ember that:
People with autism need a longer time to process the words they hear and to generate a response.
They interpret many words and phrases literally. For example, if told to sit down, they might drop to the floor exactly where they are instead of finding a chair.
They memorize words and phrases quickly and may echo them back. Sometimes they answer questions with "tapes" of things they may have heard many years ago. Often they do not truly understand the full meaning of the words they echo. Their echoed tapes may or may not fit the present situation and can be misleading. Sometimes these tapes give the impression of being hallucinations or fantasy.
Time is confusing to those with autism. They may not be able to report an accurate sequence of events. They tend to have excellent memory for details; but, the information may be presented in the wrong context or sequence. They may tell of incidents that occurred years ago as if they had happened today.
Leading questions and questions requiring reasoning or judgment will be very difficult for them to answer.
Time pressures--being rushed or pushed to move or respond quickly--will increase their stress.
The following strategies can reduce stress and make communicative interactions more productive.
1. Prior to supporting the individual with autism, find out:

How does the person communicate? What might trigger a problem? What might be calming?
2. Arrange to have a familiar, trusted person in sight. If appropriate, that person could serve as an interpreter. Otherwise, enlist the assistance of someone who knows autism well.
3. Sit next to the person rather that across a table or desk. Eye contact and fact-to-face contact tends to increase confusion and stress.
4. Talk softly and remain calm. Use concrete and literal language to ask a question. Leave out unnecessary words. Jokes and sarcasm will likely be confusing and misunderstood.
5. Take the time to establish trust and let the person know what to expect. Include some brief break periods as needed.
6. Have writing/visual materials available. Often, the person can think and process information better when the spoken words are illustrated visually.
As you talk, write out the key words or make line drawings to illustrate key people, objects, or sequences of events. Print labels on those drawings to compensate for questionable artistic ability.
Write out or draw optional answers so the person can respond by pointing. Space the pictures or words far enough apart so it is easy to know which answer is being selected. While drawing, ask, "Is it______, or _______, or________? Point to the picture to show me what it is."
Prepare a 3" x 5" index card with the words: YES, NO, I DON'T KNOW or NONE OF THESE. Use this card for
answering yes/no questions. If none of these options seem satisfactory, give the
paper and pencil to the person and say, "show me the way it was" or "you fix it the right way."
7. Avoid questions that begin with "Why"; "What do you think?" and "How." Be sure that "when" and "where" questions are very concrete and include the visual options described above.

8. Questions such as, "Did it happen this way?" are likely to receive the automatic response, "yes." This is the time to have optional answers available. ("I don't know" or "None of those").
9. Provide extra time--perhaps 30 seconds or so--before repeating a question. Try writing out the question and remaining quiet while the person thinks. Give the person the pencil and suggest writing the answer.
10. Relax, and understand that communication may take a long time.
In summary, Individuals with autism might become very confused and may panic when:
They do not understand exactly what to do They are rushed or pressured for a quick answer People use harsh voices and keep repeating the same questions People talk too loud, too fast, or use too many words People get to close, force them to have eye contact, or say,
"Look at me" People grab and try to restrain them
Individuals with autism tend to be m ore cooperative and able to give better information when:
They are relaxed and when expectations are understood Questions are concrete and clear Spoken words are paired with pictures or written words Optional answers are made visual; and "I don't know," "something
else," and other options are included They are asked to "Show me________"
Adap ted fro m M arvin M. J anze n and Janice E. Jan zen, tr ustee s of the Ma rvin M . and Ja nice E . Janz en Fa mily Trust / All rights reserved. Published by Therapy Skill Builders, a division of The Psychological Corporation
What Is Family Support?

T he underlying foundation of family support is that it is flexible,
easy to use and family -driven. Family support programs should make use of structured services and supports as well as developing informal or natural supports from friends, neighbors, extended family or others in the community. The idea behind family support is to provide whatever it takes for families of people with disabilities to
live as much like other families as possible. The support that families receive should be determined by the individual family; based on their culture, values and preferences.
THE UNDERLYING GOALS OF FAMILY SUPPORT ARE:
To keep families together until the person with a disability chooses to live independently.
To enhance a family's ability to meet the many needs of their family member with a disability.
To improve the quality of supports to families while minimizing the need and the cost of out-of-home placement.
To allow the family to participate in integrated leisure, recreational and social activities.
To make a positive difference in the life of the person with a disability as well as the lives of all family members.
To work together with a provider in a relationship based on equality and respect.
QUALITY FAMILY SUPPORT PROGRAMS SHOULD:
Focus on the entire family Change as the family needs, roles, and ages change. Encourage families to express their own needs and decide how their
needs will be met. Treat people with disabilities and their families with dignity by
respecting their individual choices and preferences. Respect cultural, economic, social and spiritual differences. Encourage families to use the natural community resources Provide supports and services that are easy to find and easy to use.

What Families and Provider Agencies
Should Expect from Each Other
To Feel Welcome and Heard
F amilies want to feel welcomed by service providers, supported in their decisions, and not pre-judged. Families know their family members and they know their needs. They expect their opinions to be heard, respected and acted upon.
To Have Control
F amily support should put real control in the hands of families. The most progressive family support programs really mean it when they say control should be in the hands of families instead of with the program and professionals. In order for this power shift to occur, the roles of professionals and parents must be redefined. Professionals must believe that parents are capable and willing to make the best decisions for their family member and families. Professionals must accept their role as a partner who assists the family when asked and in ways that the family requests. Regardless of the array of services on the official list, the attitude towards families should be "you tell us what you need and we'll try to help you get it." The most progressive programs see their mission as stretching the limits of the "system" to the extreme for families.
To Exchange Information
Information is power and it flows in two directions. Families need timely and up-to-date information about their family member's specific disability, about appropriate services and supports, and about eligibility requirements in order to make decisions about meeting today's needs and planning for the future. This information should be offered freely. To best serve you, service providers also need information about your family. However, you should only be asked questions that are relevant to your family needs and do not invade the privacy of your family.
To Decide What They Need

F amilies and family consultants each have valuable information necessary to develop an individualized family support plan. A family consultant has knowledge about services and supports available through the community. Together, with families in the lead, they develop a plan of action that articulates the family's stated needs and what will be done by whom in response to these needs. This might include supports offered through the agency, supports offered through other public agencies, financial assistance, and/or natural supports found in the community.
To Get What They Need
W hen you've met one family, you've met just one! No two families are alike. Each family has unique needs, strengths, and preferences.
Support services should be family focused. The person with a disability is not seen in isolation, but as part of the family unit. Support services should reinforce the strengths of the family and build on these strengths in the community rather than foster dependence on the agency providing the support. Family support providers should offer an array of different supports and be prepared to work with the family to obtain any needed supports outside of those offered.

Adapted from: Human Services Research Institute - 850 Lancaster Drive - Salem, OR 97301
THE FOLLOWING INFORMATION IS OBTAINED FROM THE DEPARTMENT OF HUMAN RESOURCES PROVIDER MANUAL OUTLINING THE STATE GUIDELINES FOR FAMILY SUPPORT
BACKGROUND
T he state is committed to comprehensive, coordinated community integrated services that is family-centered. The special strength of a family-centered approach is that it recognizes that each family has differing and unique needs that often cannot be met by any single existing agency or resource. Central to it is the important role families play in defining with staff what identified needs can be met within existing community, agency and family resources and the services and providers that they feel are necessary. Provi sion or assistance to families for special services in their own homes or communities can be extremely cost-effective.
DEFINITION
Family Support is designed to meet the assessed needs of targeted families when other means/resources are not available. Targeted families are those that have:
1) a family member living at (or returning) home who meets the Division's definitions of mental retardation, autism or other developmental disabili ties;
2) meets the Division's criteria for "most in need"; and, 3) the family requires assistance in order for the individual with
disabilities to remain in (or return to) the home.
For the purposes of Family Support, "family" may be defined as a group of persons living together as a unit in which there is at least one member with disabilities. The individual with disabilities may be living with his/her birth or adoptive parents, members of the extended family, a full guardian, legal custodian or a person acting in place of a parent or family member and living as a family unit. While families are the principal targets of Family Support, a family's eligibility for service is determined by the presence of an eligible member with disabilities.
Family Support includes both staff provided and purchased services and goods. All services to be provided must be documented in the Individual Family Support Plan (IFSP). Services that may be provided or purchased are defined in the section, "Authorized Goods and Services.

PURPOSE
T he purpose of these guidelines is to establish the parameters within which family support programs may provide and purchase services and goods in Georgia Department of Humans Resources, Mental Retardation programs. Through family support, services and expenditures for services and goods to meet the extraordinary needs of targeted families may be made at a per family rate.

AUTHORIZED GOODS AND SERVICES

Because of the unique needs of each family, services and goods which are available through family support have been very broadly defined, allowing families, who are in the best position to know, to identify those things most needed by them. Any service or good, or portion thereof, defined below, that is documented as needed in an individual/family's service plan as determined by an inter-disciplinary team process, may be provided fully or in part by family services. Funds will be available to families to cover the costs of goods and services upon the assurance by the administering agency that services are not available through existing resources or through other funding sources.

1. Respite Care: Services designed to relieve families/care givers of physical or emotional stresses associated with the care of the member with disabilities by the provision of care of the member with disabilities; may be provided in or out of the home. Also may include care of other young children members of the family when necessary for the primary caregiver(s) to devote exclusive time to attend to the care and wellbeing of the member with the disabilities.

2. Personal Support: An array of services to assist persons to perform activities of daily living. Personal Support includes the following:

a.
similar b.
shopping, category communicators the service,);

Assistance with, and/or training in activities of daily living, such as bathing, dressing, grooming, other personal
hygiene, feeding toileting, transferring and other tasks;
Accompanying consumers and facilitating their participation in visits for medical care, therapies. personal recreation and other community activities. (This includes staff to serve as interpreters and and the transportation costs to provide

c. Training or assisting in household care, such as meal

preparation, clothes laundering, bed-making, housecleaning

shopping, simple home repair, yard care and other similar

tasks;

d. Assisting with therapeutic exercises, supervising self-

administration of medication and performing other

services

essential to health care at home;

e. Training and support in the areas of social, emotional,

physical and special intellectual development. This

category includes mobility training as well as

programming,

intervention and/or consultation to

reduce inappropriate or

maladaptive behaviors; and,

f. Travel and travel related costs, inclusive of subsistence,

which are associated with the receipt of a plan service

that

has been determined by the family and team to be

necessary to meet these needs.

3. Day Habilitation: The design of learning environments and activities for adult individuals with disabilities which promote the acquisition of skills in a
interaction; curriculuvmarpielatynnoifndge,vineclolupdminegnttahleaprelaansn, eindcilnutdeirnagcctiongnoitfivpeerpsrooncneesls,emsaatnerdiaslos,ciaanl d time and space, that leads to achieving outcomes in the individualized service plan; the provision of services which are designed to enhance the functioning of the individual with disabilities.1

4. Personal Living Benefits: Financial assistance, up to monthly maximums to be set annually by the DMHMRSA, for personal cost of living exhpoemnesse.sP, etorsaosnsaisl tliivnindgivibdeunaelsfitwsitmhadyisbaebipliatieidsdtoirercetslyidteoitnhetheliirgoibwlen individual or directly on behalf of the eligible individual. 2

5. Dental Services: Any of the full array of services designed to care for the teeth, oral cavity and maxillo-facial area, provided by or under the direct supervision of a licensed dentist: inpatient or out-patient.

6. MeedliimcainlaCtearielln: eAsnsyoorfdthiseeafuslel aorratoy roefliseevreviscuefsfedreinsgig, nperodvtiodereddbuyceorournder the disreecrvt iscuepsearvreisinocnluosfiavelicoef ndsiaegdnpohsyiss/iecviaanlu. aTtihoen,asrerarvyicoef Mpreodvicsaiol nCanred

1
May be provided or purchased for an eligible toddler who turns three years of age while in receipt of the service in order to continue for the immediate summer months, if determined needed by an ap pr op ria te i nte r- dis cip lin ary tea m a nd n ot a vai lab le t hroug h th e lo cal ed uca tio n ag enc y.

2

The need for Personal Living Benefits is based on a monthly individualized budget which shows

client income/benefits and client living expenses based on the following: rent, household furnishings,

utilities, food. supplies, transportation, clothing, recreation, medical, etc. Personal living benefits must be

adjusted for any change in client income/benefits. New clients are eligible for a higher monthly maximum

during the first three months of residence to cover initial costs associated with establishing a household.

consuelrtvaitcioenpwroitvhidoetrhse, rpmroevdidiceadl/hbeyaaltlhicceanrseepdropvhiydseicrsiaonr. nSoenr-vmiceedsicmalay be inpatient or outpatient.

7. Specdiaelsizigend, Ccolontshtriuncgt:ioSne, rfvititcinegs awnhdicchoisntcolufdaentahretiaclseseosf scmloethnitnogfwnheiecdh,is necessitated by the conditi on of the individual with disabilities.

8. SpeciadlieztedrmDiniaegdnnoesetdicedSebryvitchesfa: Smpilyecaifnicd iinnvtersdtigscaitpivlienaprryocteeadmurebsut not prothviedeadssbeyssthmeeinntteorfdniseceipdlsinoafrythteeainmdivwidhuicahl awriethndeicseasbsilaitrieystoancdom/opr lfeatme ily.

9. Recreation/Alternative Activities: Activities that are designed to meet the social integration needs of the individual with disabilities as leisure (non-work, non-habilitative) or as an alternative to other inappropriate or non-satisfying time usage.

10. Epnevrisronnaml ehnomtael Mofotdhieficinadtivoindsu:alCwhiathngdeissa, baidlitdieitsio,nosr otor rtheepapiresrstonthael home of the fameilnyh/caanrceegitvheer,dwevheiclohpamreendte/fsuignncteiodntiongin, chreeaalsthe othrewaeblliblietyintgo of the individual with disabilities when such change, additions or repairs are not structurally permanent and do not exceed $1,000.3

11. SppreecsicarliibzeeddtoEqmueipemt heanbti:liAtadtiavpetinveeadnsdotfhtehreapineduitviciddueavl iwceiths sdpiseacbifiilcitaiellsy or devices and equipdmisaebnitlintye/espdecdifbicy ntheeedfasmoiflythtoe binedttiveirdpuraolvwiditeh faordtihseability.

12. Therapeutic Services: A direct intervention service provided by a

specifically trained therapist aimed at reducing or eliminating physical

manifestation of a disabil ity or in improving/acquiring specific skills precluded by

the disability; services proceed from assessment/evaluation to service provision.

Therapeutic services are inclusive of audiology,

physical therapy,

occupational therapy and speech therapy.

13. Counselianpgp:roSaecrhveicse, scluintiilcizailnogr anovan-rcielidnincauml, bwehricohf sapre caiifmicepdsyact haos-ssiostciniagl indbiveihdauvailosr,aonrda/ocrqfuaimreilnieeswtopaetlitmerisnaotfeboerhraevdiourcewhdiecshtraulclotiwves tphaetmtertnoscoofpe with thseairtilsiffeyicnigrctuomthsetamn;cseesrovircteoslipvreoctheeeidr lfifreomineavamluaantnioenr/washsicehssismmenotreto service provision.

14. SpeciaplilzaendninNgu,trciotiuonns:eAlinga,rsrauypeorfvsiseirovnicaensdinpcrlouvsiisvieonofoaf ssspeescsifmicednite, tary, nutritional and feeding needs of the individual with disabilities by a
nutritionist qualified by state standards.

3

"The S tate is proh ibited from exp ending funds for p ermanen t modifications on r eal prop erty to

which it does not hold fee simple title because the State might lose the modifications if the owner

appropriates the prope rty to uses other that for which state funds were expended. In such case, the

expend iture would r esult in a gift or gratuity pr ohibited b y the Georgia C onstitution, Art. 3 , sec. 6

Op. ATT 'Y Gen., 197 2, p.299". Excerp ted from a memo by Division of Mental Health Mental and

Substance Abuse Legal Officer, Sandy Laszio dated May 1, 1991.

15. Supplies: Any number of items which, while not specialized or specific to the needs of individuals with disabilities, may require frequent usage due to the disability or any number of items which, while not specialized, are necessary to the on-going operation or maintenance of specialized devices, or any number of items which are needed by the family to better provide for the disability specific needs of the individual with disabilities.
16. Oothf ethreSfearmviiclyeasn: dAninyteort-hdeisrcsipelrivniacreynteoat mlis,teisdnaebcoevses,awryhitcohm, ienetthteheopnieneiodns of an eligible individual/family, when written request is made to and
approval received from the DMHMRSA regional executive director.
FUNDING
F amily support funds will be used as a funding mechanism of last resort. Through case management methodologies, participation in other generic or disability specific programs for which the family is eligible, will be encouraged in order to more comprehensively meet the complex needs and to ensure the maximum benefits of funds available. Family support funds may be utilized in combination with other agency, community or the family's own resources.
Receipt of services or benefits from any other source will not preclude participation of an otherwise eligible family in family support as long as guidelines regarding funding mechanism of last resort are applied toward authorized goods and services.
Contracted Family Support provider agencies must maintain
written documentation that the goods and/or services purchased under Family Support are not available through other sources. Participating providers must document how services support the family to maintain the member with disabilities in the home.
Documentation of the cost of family support services, both provided and purchased, will be maintained by the contracted Family Support provider, for each eligible person(s). Costs that exceed established limits must be approved by the Regional Executive Director. A request to exceed an established rate may be made on the Family Support Waiver Request Form, in the Appendices to this section).

F amilies providing care for more that one member with disabilities are eligible for up to twice the annual per family rate, if justified. Justification should be based on whether assessed need and planned for services have a "shared" benefit to each member with disabilities or not. For example, such services as counseling, environmental modifications, or respite in some instances, may benefit members equally while the benefits of others, such as supplies or specialized equipment, may not be easily shared.
Eligibility
Families will be determined eligible for services through a team process, utilizing the following criteria: 1) the individual with disabilities is three years or older with mental retardati on, autism, or other developmental disabilities, and meets the Division's criteria for "Most in Need"; 2) the family wishes for the member to remain at (or return) home, but requires support and/or assistance in order for the individual to live in the home; and 3) the authorized goods and services for which the individual or family is eligible are sufficient to support and/or assist the continuance or return to home care. (Note: Children aged 0-3 years may be served if Early Intervention funding has been exhausted.)
Authorized goods and services shall be provided on a "sliding fee" basis. A Family Support Fee Policy, which includes a schedule of fees shall be established by the Provider Agency and approved by the Regional MHMRSA Board. Documentation of family income and resources will be obtained in order to determine if funds will be allocated. The family is eligible only if the member with disabilities is residing in the home, or if the Family Support funds are to be used to prepare the home and family for the return of the member with disabilities from an alternate care placement.
T he contracted Family Support provider agency must maintain documentation that fees for Family Support goods and services are managed in a manner consistent with the approved Fee Policy, and in compliance with applicable DHR fiscal rules and regulations.
Eligible families will be served by Family Support within the limits of the funding available. Prioritizing eligible families will be the responsibility of the staff or agency designated by the region, utilizing the required interdisciplinary team and family assessment process with consideration of the following factors:
1. Degree of family financial ability to obtain services;
2. Criticalness of need to family functioning and well-being;

3. Status of family planning to return disabled member from out-ofhome placement.
Referrals to Family Support for funding purposes may be accepted from a variety of sources including public and private providers, disability specific or generic, other program recipients, as well as self-referrals. The Regional MHMRSA Planning Unit is responsible for designating a point of receipt for all referrals within Family Support.
T he contracted Family Support provider agency must notify the family in writing of the approval or disapproval of their application for Family Support services within 30 days after receipt of the application.
Individualized Service Plans
T he goal of Family Support is to sustain and enhance the quality
of family/home life so that the individual with disabilities can remain within a nurturing family. The task is to determine what authorized goods and services need to be provided to assure that goal is accomplished. Documentation of the need for goods and services shall be made by considering the following components:

1.
2.
3. needs.

Consideration of the whole life needs of the disabled individual; Consideration of the needs of the family as primary caregiver; and Consideration of the community supports necessary to meet those

W hen the family is determined in need of Authorized Goods and Services and Family Support funds are to be utilized, the written service plan should document the following components:
1. A description of the individual, the family and its support network, the physical environment, and current services;
2. A description of the needs of the family, based on the assessment described above;
3. Written indication of all other means/sources for meeting documented needs for authorized goods and services;
4. Written indication of the goods and services that are projected to be funded

by Family Support with the estimated duration of need and estimated annual cost; and
5. The Individual Family Support Plan (IFSP) is a written participation agreement, signed by the individual and/or family, a representative of the contracted Family Support agency, and the Family Support Coordinator. The IFSP describes the Family Support goods and services to be provided and how Family Support funds are to be utilized on the family's behalf.
There shall be documentation that needed goods and services are not available through other programs prior to utilization of Family Support funds.
ALL FUNDING SOURCES AND SERVICES AVAILABLE THROUGH EXISTING PROGRAMS WILL BE DOCUMENTED AS NOT AVAILABLE PRIOR TO UTILIZATION OF FAMILY SUPPORT FUNDS.
Plan Review
Plans which include special provisions for family support funds should be reviewed consistent with time lines required for that plan but no less than once every six months following the initial plan development date and more often if determined needed. For all plans that include use of family support funds, the need for review or changes in the plan may be made by the agency or by the family. Families should be informed at the time of the initial assessment of the planned review cycle and of their right to participate and request changes.
If changes are made in the family's service plan, the reason for the changes should also be included in the record. A parent or individual and a representative of the administering agency must sign the amended agreement. The agency retains the flexibility to assist families on an as needed basis.
Provider Responsibilities
A. Administration: The contractor retains ultimate responsibility for appropriate administration and for all documentation. Coordination with all other relevant agencies is also the responsibility of the contractor.
B. Family Support Coordinator: The contractor will appoint a staff person(s) to act as coordinator(s) for family support. The person(s) appointed may perform administrative tasks and act as service coordinator for participating families. The administrative and service coordinator duties may be split among more that one staff person. A single point of contact for family support must be established and

publicized within the service area so that families will get adequate information at the time of their inquiry.
C. Grievances/Appeal Process: Families denied, discontinued or whose benefits have been reduced must be notified of the reason for denial, discontinuation or reduction of benefits and must be informed in writing of their right to appeal these decisions. The contractor established client appeal procedures should be made available to the participating families.
D. Reporting: The contractor will submit reports as may be required by the regional MHMRSA planning unit that may include an annual report which provides a statistical summary of expenditure, client data and a narrative summary of achievement of family support.
E. Records: The contractor is responsible for maintaining all financial records including service vouchers/purchase orders; records must be maintained in a easily accessible place for monitoring/auditing purposes.
QUESTIONS TO ASK POSSIBLE PROVIDER AGENCIES
1. What type of support services does your agency provide? In-home scheduled respite In-home emergency respite Out-of-home scheduled respite Out-of-home emergency respite On-going personal supports Billing for specialized medical equipment Billing for specialized medical supplies Internal case management
2. Where are your out-of-home respite supports offered? Group home Host home

3. What staffing patterns are available within these support service options?
4. What experience does your staff have in supporting individuals witahutism?
What training does your staff have in supporting challenging behaviors? Do you use restraints? Are you certified to give medications? How do you ensure that medications are given properly? Do you have a behavior specialist on staff? Do you assist in developing behavior support plans? What training does your staff receive in supporting individuals with challenging behaviors?
What training does your staff have in supporting communication? What training does your staff receive in supporting individuals who use augmentative alternative communication systems? What training does your staff receive in supporting individuals who are nonverbal?
5. How long has your agency been in business? What accreditation process do you participate in?
6. How does your agency handle crisis or emergency situations?
7. How do you include families in your supporting of individuals wi th autism?
Accessing Regional Systems
R egional MHMRSA Boards were created in 1993 by the
implementation of House Bill 100. House Bill 100 called for the redesign of the service system to make it more efficient, more responsive to the public and consumers, less bureaucratic, and better able to focus on local needs and service providers. Currently there are thirteen Regional MHMRSA Boards in Georgia that are
responsible for identifying Community Mental Health, Mental Retardation and Substance Abuse needs. The regional boards contract with agencies to provide needed services and monitor the services provided to ensure that all providers meet Core Requirements and Community Standards for MHMRSA Services.

In 2000, the State legislature appropriated new money for the
regional MHMRSA boards to provide family support services to individuals with autism. The following is a list of all the regional boards and the agencies they contract with for family support services. As a general rule individuals are eligible for autism family support funding if they are three years of age or older and have a diagnosis of Autism or
related disorders and live with a family member. Any additional eligibility requirements are noted below.

Division of Mental Health, Mental Retardation and Substance Abuse REGIONAL EXECUTIVE DIRECTORS and UTILIZATION MANAGERS Revised May 7, 2000

Region 1
Northwest GA Regional Bd. Jim Mallory, Interim Director 32 W. Main Street, Suite 104 Cartersville, GA 30120-3506 770/387-5411 FAX 770/387-5417 Contact person: Raymer Wilson, UM

Region 3
Northeast GA Regional Bd. Margaret Bradford, Director 236 Indu strial Par k D rive Comm erce, GA 30529-6642 706/336-6822 FAX 706/335-5420 Contact person: Frances Germany-Borman, UM

Region 2
Region 2 MH MRSA Board William A. Touchstone, Director 211 Prime Point, Building 1, Suite A Peachtree City, GA 30269-3334 770/254-7474 FAX 770/254-7479 Contact person: Lisa Mader, UM

Region 4
Cobb/Douglas Regional Bd. Michael Swingle,Director 2137 Kingston Court, S.E. #108 Marietta, GA 30067-8901 770/916-2100 FAX 770/916-2102 Contact person: Sharon Williams-Mack, UM

Regional Boards (continued)
Region 5
Fulton Region al MHMRSA Boa rd Earnestine P. Pittman, Director Citizens Trust Building 75 Piedmont Avenue, 11th Floor Atlanta, GA 30303-2507 404/463-6367 FAX 404/6369 Contact person: Gloria Sheppard, UM
Region 6
Dekalb Regional MHMRSA Bd. Carol T. Bush, PhD., Director 4329 Memorial Drive, Suite K

Region 9
West C entral Regiona l Board Gregory C. Hoyt, Director 3800 Schatulga Road Columbus, GA 31907-3118 706/568-5281 FAX 706/569-3140 Contact person: Linda Heard. UM
Region 10
Southw est GA Regiona l Board Kenneth R. Brandon, Director 200 West Oglethorpe Blvd.

Decatur, GA 30032-1236 404/298-4990 FAX 404/298-4994 Contact person: Phillip Harshaw, UM
Region 7
GRN Regional MHMRSA Bd. James E. Mallory, Director 2311C Henry Clower Blvd. Snellville, GA 30078-3107 770/972-6305 FAX 770/972-0324 Contact person: Beth Rainer, UM
Region 8
Region 8 MH MRSA Board Arthur Carder, Director 515 Academy Avenue Dublin, GA 31021-5201 912/274-7912 FAX 912/274-7915 Contact person: Jennifer Freeman, UM

4th Floor, Suite 402 Albany, GA 31701 229/430-3017 FAX 229/430-4098 Contact person; Katrina Green, UM

Region 11
South Georgia Regional Bd. Catherine E. McRae. Director 211 E. Ashley St. #s 104 & 105 PO BOX 1250 Douglas GA 31534-1250 912/389-4207 FAX912/389-4074 Contact person: Tara Phillips, UM

Region 12

Region 12 MH MRSA Board

`

M. Andrew McCollum, Director

1056 Claussen Road, Suite 223

Augusta, GA 30907-0327

706/667-4833

FAX 706/667-4840

Contact person:

Betty Dychea, UM

Region 13
Southeas t Coastal Re gional Board Ralph A. McCuin, Director 777 Gloucester Street, Suite 104 Brunswick, GA 31520 912/280-6893 1-800-348-3503 FAX 912/280-3503 Contact person: Mitch Sweeny, UM

Regional Family Support Providers
Each of the thirteen regional boards contract with at least one specified agency that acts as fiscal manager and coordination for family support services. Some of the boards have contracts with several different agencies. Below is a list of current service agencies for each region. Regions have the option of changing contracted agencies on an annual basis; therefore, contact your regional board for a list of current service agencies.
Northwest Georgia Regional MHMRSA B oard - Region 1 Lookout Mountain Community Services.
Contact Persons: Jim Moon 706/375-2142 Barbara Downey 706/639-2072

Three Rivers Behavioral Health Systems. Contact Persons: Lisa Dodd and Moni Owen 706/295-6425
Georgia Highlands Community Service Board. Contact Persons: Mike Woffard (Burnt Mtn. Center) 706/692-6016 Flondell Thompson (Cherokee Training Center) 706/345-5821 Alice Blackwell (Cheerhaven) 706/278-8143 Gayle Harper (Mineral Springs Ctr.) 706/632-2094
Region 2 MHMRSA Board: Macintosh Trail Community Serviced Board. Contact Person: Bonnie Standard 770/358-8331 Pathway Community Service Board Contact Person: Wanda Yarborough 706/845-4045 Clayton Center Community Service Board. Contact Person: Rick Derby 770/960-9979, ext.110
Northeast Georgia Regional MHMRSA Board - Region 3 May South Contact Person: Shannon Scott 770/297-0006
Cobb/Douglas Regional MHMRSA R egion 4 Cobb/Douglas Community Service Board. Contact Person: Linda Smeta 770/948-1411
Fulton Regional MHMRSA B oard - Region 5 May South 770/956-8511
Regional Family Support Providers (continued)
Dekalb Regional MHMRSA Board - Region 6 Georgia Community Support and Solutions. Contact Person: Susan Creek 404/634-4222, ext. 230
GRN Regional MHMRSA Board - Region 7 Georgia Community Support and Solutions. Contact Person: Susan Creek 404/634-4222, ext. 230
Region 8 MHMRSA Board United Cerebral Palsy of Macon. Contact Person: Kay Griffin 478/477-4673 River Edge Behavioral Health Services Contact Person: Deborah Toole 478/751-4541

Phoenix Center Contact Person: Jeffery Douglas 478/322-4000 Oconee Center Contact Person: Steven Holloman 478/445-5255
West Central Regional MHMRS A Board - Region 9 New Horizons Community Service Board Contact Person: Dottie Herrington 706/596-5557 Middle Flint Behavioral Health Care 912/931-2488
Southwest Georgia Regional MHMRSA Board - Region 10 Easter Seals: Contact Person: Beth English 229/889-9647 or 1-800-999-1564
South Georgia Regional MHMRSA Board - Region 11 Easter Seals Southern Georgia Contact Person: Beth English or Tanya Jordan 1-800-999-1564
Region 12 MHMRSA Board Southern Home Care Contact Person: Betty Dyches, Utilization Manager of Region 12 Board 706/667-4833
Southeast Coastal Regional MHMRSA Board - Region 13 B & B Care Services Contact Person: Lynnette Bragg 1-800-657-7017 or 912/754-0817
Accessing State Systems
T he Georgia Department of Human Resources allocates funding to the regional MHMRSA boards and sets state guidelines for all services to people with mental health, mental retardation and substance abuse. The main funding sources for services to people with autism and other developmental disabilities are Social Services Block Grant (SSBG) funds and Medicaid waiver funds and state Grant-in-Aid (GIA) funds. These funds can be allocated to people who are determined to be eligible by the regional boards. Each regional board maintains a planning list of individuals who have applied for services. Criteria used by regional boards to determine funding can include; but, is not limited to the following:
Limited or no family support network Suspected or known abuse or neglect Unstable living situation Severe illness or aging of parent or caregiver Significant behavioral and/or emotional issues

Significant physical care issues Significant medical care issues
The regional board contracts with Comprehensive Evaluation Teams (CET) who evaluate to determine eligibility for services. The CET is made up of a social worker, psychologist or behavior specialist, nurse and as needed, physician, speech, hearing, occupational or physical therapists. These professionals will evaluate the individual to determine eligibility by the individual's level of need. If funding is through the Medicaid waiver program, the evaluations will be sent to Georgia Medical Care Foundation for final approval of eligibility. Some of the more common services provided through these funding sources are respite, family support, personal support, day habilitation, supported employment, residential services and support coordination.
Respite services are designed to relieve families/caregivers of physical or emotional stress associated with the care of a family member with disabilities. The Georgia Department of Human Resources defines respite care as short-term interventions provided to persons who are unable to care for themselves in the absence of the primary caretaker. The extent and schedule of respite care is determined by individual needs. These supports should be individualized and can be delivered in a variety of ways. Respite care can be delivered in the family's home, in a host family's home or in a personal care home. Individuals can receive respite care in home-based settings or they can participate in community activities or both. Respite care is limited to between thirty and fifty-two days per year depending on the assigned funding program.
Family Support Services are services provided or purchased for
individuals and family members of an individual with disabilities, based on their identified needs. This service enables individuals and/or their families to obtain services, supports, adaptive devices. Architectural modifications necessary to maintain an individuals functioning in their own or family home may be made as long as
it is not a permanent modification that enhances the homes value.
Personal Support Services are services including a range of
interventions with a particular focus on training or support in one or more of the following areas; eating and drinking, toileting, personal grooming and health care, dressing, communication, interpersonal relationships, mobility, home management, and use of leisure time. Personal support services are offered on an
hourly basis for up to 24-hours each day and up to 365 days per year depending on the individual's needs.

Day Habilitation Services are services aimed primarily at the
development, acquisition, enhancement and maintenance of skills that further the individuals ability to function independently in the home and community. Services include interventions in the areas of social, emotional, physical and intellectual development and may include training in areas such as daily living skills,
communication, mobility, and reduction of maladaptive behaviors and use of community resources. Day Habilitation Services are usually provided in a Service Center or in the community and are provided on an hourly basis up to six hours per day for a total of 1440 hours per year or 240 days per year.
M ental Retardation Waiver Program (MRWP) Day Support Services are designed to assist persons in the acquisition, retention and/or improvement of skills that create a quality and day for the consumer. This service offers a combination of supports by addressing the multiple needs for an individual on any given day. It is intended to assist the individual with the community activities, pre-vocational activities and/or supported employment activities and includes the administration of medication during the day while participating in the services. The ISP for persons receiving this service will reflect the specific support components as well as their frequency and duration.
MRWP Day Support Services will begin in Fiscal Year 2002.
S upported Employment Services include: Job development and placement: a person-centered process designed to assist persons seeking employment with career exploration and acquiring knowledge of employment opportunities within the community. Specialized activities and employment services: support to individuals
employed in segregated environments including enclaves and other segregated settings. Wages paid are commensurate with an individual's abilities, utilizing Department of Labor requirements for payment of sub-minimum wages. Intermediate employment services: support to individuals employed in integrated settings. Wages paid are commensurate with an individual's abilities, utilizing Department of Labor requirements for payment of sub-minimum wages. Job-related supports and training are available as needed. Advanced employment services: support for individuals to choose, get and keep competitive work in integrated settings that also employ workers without disabilities. Advance employment jobs are paid work of 80 hours or more per month, with wages commensurate with those earned by individuals without disabilities doing similar work.

Residential Services are a variety of community living arrangements and the range of training and supervision to meet a board range of needs for persons. The particular type of residential services that should be provided to a given consumer over time must vary according to fluctuating needs of that consumer. Residential services based on the consumer's needs may be highly structured, heavily supervised, and programmatically intensive, or the residential service may facilitate a relatively independent lifestyle requiring only a modest amount of staff support. Residential services should be a part of the community and the environment and size of the residential option should blend in with the surrounding homes. Residential placement and size should meet the consumer's needs.
S upport Coordination is a level of coordination that is offered to
consumers based on the consumer's level of functioning. All consumers are provided basic coordination that facilitates access to resources and services to consumers as needed and coordination of the individual's services with the individual and family, as appropriate. This level of coordination of services is typically
provided by a single staff person who is responsible for each individual served across all programs and types of service and responsible for the overall service plan with the consumer.
Information Needed to Access State Systems
It is important to remember that when you apply for financial help or support services from state or federal government programs certain personal information will need to be provided. This includes copies of records to verify the information given. Some agencies will allow you to apply by phone. Below is a list of some forms, which may be required when applying for assistance.
Birth certificate or other proof of age (a census record, insurance policy, a school record, baptismal record).
Payroll slips, bankbooks, insurance policies, car registration, and burial fund records.
Social Security card or record of the number. Letters or forms that shows the person's income from Social
Security, SSI, Veterans Administration (VA), retirement or other sources of income. Insurance policies, bank statements (checking and savings). Information about property the person owns or is buying or having transferred. Information about the home where the person lives, such as the person's mortgage or lease and the landlord's name.

Health insurance information. Medical and non-medical records describing the physical and
mental condition of the person with the disability. Names, addresses and telephone numbers of doctors, hospitals
and clinics that have treated the person with the disability. Proof of U.S. citizenship or el igible non-citizen status. Unpaid medical bills. If married, a marriage certificate.
Below is a list of questions that may help you obtain relevant information about the specific program.
Who is eligible? What are the limitations of the program or agency? (What doesn't
the agency cover? Types of services covered? What is the application process? Is there an application deadline? What information will the agency want? What records are needed; should they be copies or originals? Is an agency referral required for a person to take part in this
pro gra m? Is there an appeal process if the application gets turned down? Do you know of other programs or agencies that might help?
Remember to keep notes about the conversation and document the day and time of the conversation as well as the name of the person who provided you with the information.

Supporting Individuals with Autism
Through Transitions
W hen supporting individuals with autism through life
transitions, it is imperative to organize and structure the environment to clarify information and eliminate some of the factors that contribute to their concerns, fears and anxiety.
F or example, when going to a doctor, it is important to not only prepare the individual with autism, but to prepare the medical professional and office staff with information about autism and the individual. Provide strategies to help develop rapport and to communicate with the individual. Ask for their ideas of how to make the visit easier. Keep records of behavioral symptoms that may indicate medical problems. Have a medical history available.
Preparation for transitions, changes or new and unexpected events is an ongoing process. The following information can be used to assist families and individuals with autism in planning for transitions with staff changes and/or major life activities.

1. Arrange a visit to the new setting. Locate important areas (i.e., bathroom, quiet space, where to go for help, etc). Introduce support staff. Try to have a preferred person accompany the individual. Video tape or photograph the visit. Label important areas using a floor map. Use words and/or picture representations. Write social stories about the new situation
discussing new opportunities, schedules, routines.
2. Prepare new people/staff about how to best support the individual with autism. Prepare a "me" book that describes likes/dislikes, how he/she best communicates, etc. Have available general information on "communicating with individuals with autism."
Use the "critical information" form and/or the "transitions interview" form (Appendix X) when discussing the needs of the individual with autism. This information should be available to all support staff including educators, therapists, physicians, baby sitters, private providers, etc. It can assist you and the team to develop the most appropriate supports for your family member.
The Transition Plan from
School to Community
A transition plan is required for individual students receiving academic support in special education placements. By law, this process begins with the Individual Educational Plan (IEP) when the student is fourteen years old; however, a long term planning for individual supports and services should be an on-going process throughout an individual's school and post school years.
An effective transition plan includes participants ( the student, extended family members, professionals, advocates, community and regional agencies and natural supports) who understand the direction and needs of the family and the individual with autism. The directions that are developed must have clear time lines and assignments of who should be doing what. The plan should be flexible to meet the changing needs of the individual.
All transition plans should be developed around a person-centered approach and obtain direction from the preferences, talents and participation of the individual with autism. This is a long-term vision that is geared to include individuals within their communities.

All person-centered planning activities seek five essential goals, outcomes, or accomplishments in the individual's life.
1. An individual should be present and have opportunities to participate in community life.
2. An individual should have opportunities to gain, maintain, and be supported in healthy and satisfying relationships.
3. An individual should have opportunities to express preferences and choices and others should listen and respond respectfully.
4. An individual should have opportunities to fulfill respected roles, to be valued as a person and to live with a dignity.
5. An individual should have opportunities and support to continue to develop personal competencies. Withi n each of these goals it is essential to discuss what barriers and obstacles there may be in reaching the desired outcomes.
T his is a life-long, ongoing process that will provide richer insights into how to more effectively support the individual with autism across all environments.
Crisis Intervention Management Planning
T he current research suggests that positive educational approaches reduce the frequency and intensity of challenging behaviors while increasing individual competence and independence. Boredom, confusion, stress, medical problems or lack of strategies have an impact on challenging behaviors. It is essential that those supporting individuals with autism know how to react to accelerating behaviors to prevent a crisis and possible injury.
Acrisis plan is an important tool to the support team (at home, at school, in the community) in managing emergency situations. The team should obtain recommendations and information from family members, school personnel, autism and other specialists, psychologists, etc., in developing the crisis plan.
T he goals for any crisis management plan should be to defuse anxiety and panic and to keep people safe. The plan should include:
1. A description of behavioral signals that precede and follow the crisis.

2. A plan to prevent injury and maintain a safe environment. 3. A training plan. 4. A monitoring or record keeping plan. 5. A family/staff support plan.
T his information will help the team understand the reasons for the behaviors and quickly identity any modifications that may be needed.
The following guidelines should be considered for managing a crisis:
1. Model calm, quiet, reassuring behavior. Make sure your facial expression and body posture demonstrates this.
2. Step back so that personal space is honored. Move slowly and in a relaxed manner.
3. Minimize talking; keep your voice calm. If there is more that one person in the room identify the one person who will be speaking.
4. Reduce demands; for example, do not force a choice or ask what is wrong.
5. Instruct the individual what to do clearly, simply, and calmly, (i.e., sit down, put your hands in your pocket, etc.)
1. Provide visual supports.
7. Listen to what the individual is saying and acknowledge the feelings or cause of the problem, if identified.
8. Reinforce every effort of self-control.
It is important to maintain a safe, non-aversive process. Do not physically restrain or engage in a physical struggle unless there is imminent physical danger to self or others. Hands-on training from certified professionals is needed prior to using any physical supports to restrain.
High anxiety or crisis situations are emotionally draining and physically exhausting for all involved. Each person involved with the crisis should have a routine to follow after the situation has resolved such as a relaxing activity, a place to sit, a shower, etc.
T he ability to understand and effectively support challenging behaviors and crisis situations requires creativity and flexibility. Interventions will only be successful if we look at the situation from the perspective of the person with autism.

Team Building
No single family member or professional can support an individual with autism alone. A team of individuals, comprised of people who care about and work with the person with autism, is needed and will develop and change over time. This team should consist of the individual with autism, family members, school personnel, other professionals and other natural supports. To be effective, members must understand the impact of autism on learning and behavior. They must be flexible, non-defensive and creative.
An effective team should collaborate and share information. Members of the team must establish a supportive and non-threatening relationship for open discussion, problem solving and providing positive feedback. There must be mutual respect for individual team member's skills and knowledge by relying on honest and clear communication.
T he following strategies can lead to an efficient and effective support team that operates proactively:
1. Take time to develop a rapport and good working relationship with each other.

2. Decide on a team facilitator. The facilitator should have the skills needed to keep focus on the issues and monitor follow-through.
3. Decide on a team recorder. This person should have the skills needed to record discussions and decisions of each meeting. This
person will distribute copies of meeting notes.
4. Try to meet regularly and as frequently as needed.
5. Take advantage of each member's area of expertise, strength and interests.
It is important to remember that professionals can interpret the life of the individual outside of the family environment and can provide a different more objective perspective in day-to-day learning and support. By working collaboratively the support team provides necessary information to assist the individual with autism to function as independently and productively as possible.
Statewide Resources
There are several programs statewide that can offer support, interventions and networking to individuals with autism and their families. Below is a list and description of these programs.
BABIES C AN'T W AIT
B abies Can't Wait (BCW) is Georgia's statewide interagency
service delivery system for infants and toddlers with developmental delays or disabilities and their families. The Georgia Department of Human Resources Division of Public Health is the lead agency administering the Babies Can't Wait Program in Georgia. The division ensures that:
1. Services are provided in accordance with federal guidelines; 2. Families have access to the services which are needed to
enhance their child's development; and 3. Training is available to ensure that professionals who work with
children and families have up-to-date information.
Babies Can't Wait was developed to assist families with babies under the age of three who have problems in any area of development. It begins with a complete evaluation of the child's development. The next step is to identify services and resources to help the family meet the child's developmental needs.

What services are available?
E very child enrolled in BCW has an Individual Family Service
Plan (IFSP) which addresses the specific needs of the child and is based on the results of evaluation and assessment information, including parent concerns. The plan includes outcomes for the child and/or family, strategies and activities to address outcomes, and the resources needed to meet the outcomes. The state must
make sure that all of the early intervention services identified are available and accessible to the child and family. State funds may be available to assist families who the district health office finds cannot pay for services. Evaluation/assessment, service coordination, IFSP development, and procedural safeguards are offered to families at no cost.
W hen the plan is completed, children are linked with service providers in their area. The BCW Program will teach parents how to work with their child and will link them to support groups and services, if needed.
Early Intervention Services may include assistive technology devices, audiology, family training and counseling, health services, medical diagnostic services, certain nursing services, nutrition services, occupational therapy, physical therapy, psychological services, social work, special instruction, speech-language pathology, vision services and transportation to services.
Who is Eligible?
Children may be eligible one of two ways:
1. Children from birth to their third birthday who have problems that could delay their normal development are eligible regardless of income. Children are automatically eligible if they have certain diagnosed problems including, but not limited to: Down Syndrome, Fetal Alcohol Syndrome, blindness, spina bifida, cerebral palsy, and autism.
2. Children who have a diagnosed developmental delay confirmed by a qualified team of professionals (these may include children who are far behind their peers in learning to turn over, crawl, walk and talk, and children with emotional or speech and hearing problems).
Your service coordinator can help apply for waivers in the Medicaid program (such as the Deeming/Katie Beckett waiver) or assist in receiving help through other agencies. Information is available on what groups and organization may be additional sources of help in your community.

How to contact Babies Can't Wait
Babies Can't Wait has a statewide directory of information run by Parentto-Parent, Inc. of Georgia. The directory provides information about the BCW Program located nearest to the child and family. Families can call a toll-free number to find the closest BCW office. To access the directory, call 1-800-2292038. In Atlanta, the number is 770/451-5484. These numbers are answered by parents of children with disabiliti es, who link callers with other parents whose children have similar problems. The state Babies Can't Wait office number is 404/657-2726 or 1-888-651-8224.
Babies Can't Wait/Early Intervention Programs
Health District 1-1: Rome 501 Broad Street, Suite 211 Rome, GA 30161 706/802-5072 FAX: 706/802-5071
Counties Served: Bartow, Catoosa, HCahraattlosogna, ,PDaualddein, gF,loPyodlk, GanodrdWona,lker
Health District 2: Gainesville 1856-3 Thompson Bridge Road Gainesville, GA 30501 770/531-4053 or 1-800-204-8731 FAX: 770/538-2784
Counties ServeHda:rBt,aLnukms,pDkianw, Rsoanb,uFno, rSstyetphh, eFnrasn, kTloinw, nHsa,bUenrsiohnaman,dHWallh, ite
Health District 3-2: Atlanta 151 Ellis Street, NE Atlanta, GA 30303 707/730-4027 FAX: 404/730-4038
Counties Served: Fulton
Health District 3-4: Lawrenceville 175 Gwinnett Drive, PO Box 687 Lawrenceville, GA 30246 770/339-5062 FAX: 770/339-5345
Counties Served: Gwinnett, Newton, and Rockdale
Health District 1-2: Dalton 130 East Main Street, Suite 105 Canton, GA 30144

770/720-3542 FAX: 770/720-3537 Counties Served: Cherokee, Fannin, Gilmer, Murray, Pickens and
Whitfield
Health District 3-1: M arietta 1650 County Services Parkway Marietta, GA 30008 770/514-2357 FAX: 770/514-2803
Counties Served: Cobb and Douglas
Health District 3-3: Forest Park 7146 Southlake Parkway Morrow, GA 30206 770/960-9961 FAX: 770/960-9664
Counties Served: Clayton
Health District 3-5: Dekalb 2189 North Lake Parkway, Suite 106 Tucker, GA 30084 770/934-7884 FAX: 770/934-8526
Counties Served: Dekalb
Health District 4: LaGrange 122 Gordon Commercial Drive, Suite A Lagrange, GA 30240 706/845-4035 FAX: 845-4038
Counties Served: Butts, CarMroelrl,iwCeotwheert,aP, Fikaey,eSttpea,ldHienagr,dT, rHouepnrayn, dLaUmpasro,n
Health District 5-2: Macon 171 Emery Highway Macon, GA 31204 912/745-9200 or 1-888-449-01085 FAX: 912/745-9040
CountJioenseSse, rMveodnr:oBea, lPdweainc,hB, iPbubt,nCamra,wTfowridg,gHs,oWusatosnh,inHgatonncoacnkd, JWaislkpienrs,on
Health District 7: Columbus PO Box 672, Americus, GA 31709 912/931-2980 FAX: 912/931-2471
Or 705 17th Street, Suite 208 Columbus, GA 39102 706/327-0189 FAX: 706/327-1355
CMoaurniotnie, sMSuesrcvoegde:eC, Qhautittamhaono,cRhaened, oCllpahy,, SCcrhislpe,y,DSouomly,teHr,aSrrtiesw, Marat,cToanl,bot, Taylor and Webster

Health District 8-2: Albany 1306 South Slappey Blvd., Suite A Albany, GA 31707 912/430-4212 or 1-800-430-4212 FAX: 912/430-5145
CountieGs rSaedryv,eLde:eB, aMkieller,r,CMalihtcohuenll,,CSoelmquinitot,leD,eTceartruerl,l,DTohuogmhaesrtya,nEdaWrlyo,rth
Health District 5-1: Dublin 1835 A. Highland Westgate Dublin, GA 31021 912/275-8305 or 1-888-262-8305 FAX: 912/274-7893
Counties Served: Bleckly, DPoudlagsek,i,JToehlnfasiorn, ,TLreauutrlens, ,WMhoenetlgeormaenrdy,Wilcox
Health District 6: Augusta 1916 North Leg Road Augusta, GA 30909 706/667-4279 FAX: 706/667-4278
Counties Served: Burke, Columbia, Emanuel, Glascock, Jefferson, Jenkins, Lincoln, McDuffie, Richmond, Screven, Taliaferro, Warren and Wilkes
Health District 8-1: Valdosta 2700-C North Oak Street Valdosta, GA 31602 912/245-6565 or 1-800-247-6538 FAX: 912/245-6561
Counties Served: Ben Hill, Berrien, Brooks, CooLko, wEnchdoelss,,TIriwftina,nLdaTnuiernr,er
Health District 9-1: Savannah Chatham County Public Health Department 11706 Mercy Boulevard, Building #8, Door B Savannah, GA 31420 912/921-7480 FAX: 912/921-7490
Counties Served: Chatham and Effingham
Health District 9-2: Waycross 1718 Reynolds Street Waycross, GA 31501 912/284-2552 or 1-800-429-6307 FAX: 912/287-6689
Counties Served: Appling, Atkinson, Bacon, Brantley, Bulloch, Candler, Charlton, Clinch, Coffee, Evans, Jeff Davis, Pierce, TattnWalal,rTeoaonmdbWs,ayne
Health District 9-3: Brunswick 1609 Newcastle Street, Room 307 Brunswick, GA 31520 912/264-3961 FAX: 912/262-2315
Counties Served: Bryan, Camden, Glynn, Liberty, Long and McIntosh

Health District 10: Athens 468 North Milledge Avenue, Suite 206 Athens, GA 30601-3808 706/369-6101 FAX: 706/369-5709
Counties Served: Barrow, ClarkMe,oErglbaenr,t,OGcroeneenee,,OJgalcektshoonrp, eManddisoWna, lton
State Office Babies Can't Wait Georgia Department of Human Resources #2 Peachtree Street, N.E., 7th Floor, Room 7-315 Atlanta, GA 30303-3186 404/657-2727 or 2726 1-887-650-8224 FAX: 404/657-2763 1-887-650-8225
Ethel Curtis, ICC Coordinator Helen Dulock, Nursing Program Specialist Wendy Sanders, Babies Can't Wait Project Director; Stephanie Moss, Children with Special Needs Acting Team Leader Karen Sparkman, Acting Coordinator of Technical Assistance Unit Carol Vasbinder, Office Manager
Central Directory 1-800-229-2038 or in Atlanta 770/451-5484

THE EMORY AUTISM RESOURCE CENTER
T he Emory Autism Resource Center (EARC) is a part of the
Department of Psychiatry and Behavioral Sciences at Emory University School of Medicine. The program was opened in 1991 as a public, private, and university collaboration.
Model Demonstration Programs Walden Early Childhood Programs Elementary School Inclusion Adult Support Assistance
Statewide Family Support Clinic and Home-based Parent Training Parent Seminars, Workshops, Conferences School and Community Consultation Comprehensive Life Planning Statewide Parent and Professional Network
Interdisciplinary Training Awareness/Familiarity/Competency Sequence for Education/Early Intervention Specialists Psychiatry and Pediatric Resident Rotation Nursing Student Practical Pre- Post-Doctoral Psychology Internships Undergraduate and graduate Traineeships Statewide Training for Daycare Providers
Medical Services Comprehensive Diagnostic Evaluation Medication Evaluation and Monitoring Physician Consultation Network
Community Outreach Participation on National & Statewide Poli cy/Peer Review Forums Interagency Collaboration
The EARC Family Support Program

T he basic mission of the EARC is to help Georgia's people with autism reach their highest potential. The family program is designed to fit the individual needs and priorities of families with children with autism. Parents design their own family program by choosing topics from the family program menu. This menu includes modules on the incidental teaching of language, social skills, self-care skills and leisure/play skills. Other issues addressed include behavior management and advocacy. EARC offers an intensive family program of weekly sessions and a follow-up program of monthly sessions.
Who is eligible?
F amilies with children 18 months through adulthood that have a diagnosis of a pervasive developmental disorder (autism, Asperger's or PDD-NOS) are eligible.
Where/How often do visits occur?
In-clinic Services: Sessions are scheduled at the rate of one visit per week for one and one-half hours.
In-home Services: Families living within 60 miles of Atlanta will be eligible to receive home visits. Sessions are scheduled at a rate of one visit per week for two hours.
When do visits occur?
Both in-clinic and in-home visits occur Monday through Friday between the hours of 9:00 a.m. and 5:00 p.m.
What happens during the course of these visits?
T he first month of the intensive program will be devoted to getting to know you and your family. EARC staff will go through the family program menu and conduct a "home activities inventory" to determine your goals and priorities for your child and family. They will also spend time getting to know your child and assessing his/her learning style and strengths.
After the first month, the content of the sessions will be geared towards addressing targeted goals from the family program menu. As the parent/caregiver, you will be an integral part of every visit by observing and practicing the teaching techniques that are utilized as part of the program.

How long does the program run?
T he intensive program runs for a period of six months. This is followed by a six-month period of monthly follow-up sessions. Upon completion of the follow-up phase, EARC staff will meet with families on an as-needed basis.
F or more information contact the EARC Family Program Coordinator Toni Thomas, at 404/727-8350.
INTERDISCIPLINARY TRAINING
T raining options for teachers and health care professionals are developed individually and are based on needs and interests. A range of options is available, from brief presentations or workshops to 12-month internships. The demonstration programs serve as a formal training site for professionals in various disciplines; including, psychiatry, psychology, education, social work, nursing and pediatrics.
MEDICAL SERVICES
Comprehensive diagnostic evaluations are offered to individuals of all ages, and detailed treatment recommendations are provided through discussion with families and written reports. The EARC psychiatrists also offer psychiatric evaluation and monitoring of medication; as well as, consultation to community physicians.
COMMUNITY OUTREACH
T he Center conducts conferences and workshops that attract the contribution of leading autism experts. The conferences and workshops are open to families and professionals throughout Georgia.
RESEARCH
T he EARC's twelve years of federally-funded research efforts in social development and early intervention have contributed to changes in treatment approaches used by autism programs around the country.
DEMONSTRATION OF TREATMENT INNOVATIONS

T he EARC's programs for early intervention and elementary school children provide live examples of the enormous treatment possibilities that have come from recent research.
WALDEN EARLY CHILDHOOD PROGRAMS
T he EARC's Walden Lab Schools provide early intervention in toddler, preschool and pre-kindergarten classrooms. This continuum of highly specialized treatment help children with autism learn from the behavior of their typically developing classmates. The incidental teaching procedures used at Walden have produced significant outcomes of nearly all children enrolled. Walden serves as a model for programs in Savannah, GA., San Diego, CA. and Auburn, AL.
ELEMENTARY SCHOOL INCLUSION
T his program has made it possible for many students with autism to be included in regular classes in their neighborhood schools. This program emphasizes participation of administration, professional support staff and regular and special education teachers in order to optimize inclusion success for children with autism. A strong foundation of social skills and peer involvement with the students with autism allows for new skill development; as will as, fosters the development of numerous friendships among all the students.
ADULT COMMUNITY ASSISTANCE
Services for adolescents and adults with autism include support for inclusion in community settings through technical assistance to employers, school systems and other agencies. In addition, a support group for adolescents and adults with Asperger's Syndrome meets monthly at the EARC. The EARC is also associated with the "Best Buddies" program, a volunteer organization in which college students provide community outings and social interactions for young adults with autism.
FOR REFERRAL INFORMATION CONTACT:
Emory University School of Medicine Gail McGee, Ph.D. Department of Psychiatry, Emory Autism Resource Center 718 Gatewood Road, Atlanta, GA 30322 404/727-8350

JUDEVINE
Center for Autism Training at Gracewood State School and Hospital
T he Judevine model uses positive reinforcement and structured training sessions to help children and adults with autism and other developmental disabilities improve their skills and live more independently. Judevine training is practical, hands-on, and competency-based. Judevine coaches the parent, caregiver or professional to actually apply the techniques with the child.
T he Judevine Center for Autism Training at Gracewood State School and Hospital (GSSH) uses the Judevine model for training persons with Autism. The Center also trains their families, caregivers, and professionals who work with those with autism. The Center got its name from the Judevine Center for Autism, which is a nationally recognized autism program in St. Louis, Missouri (1970).
T he Judevine Center for Autism Training offers a 5-day Autism Workshop and an 8-day Parent/Caregiver Training. The Center serves families in eastern Georgia.
CONTACT INFORMATION: Gary Hefner or Joyce Cox 706/790-2103 or 706/790-2542 FAX: 706/790-2544 E-mail: gjheffne@dhr.state.ga.us
jgcox@dhr.state.ga.us
THE MARCUS INSTITUTE

The Marcus Institute is an affiliate of Kennedy Krieger Institute at
Emory University dedicated to child development providing diagnosis, therapy and care management for a complete range of mild to severe disabili ties.
Marcus Behavior Center provides
assessment and treatment services for a variety of severe behavior difficulties within pediatric populations. The center is affiliated with the world-renowned behavioral programs at Kennedy Krieger Institute which has provided similar services to children in
Maryland for more that 20 years. Their goals are to:
Provide the most advanced and comprehensive treatment services available for children experiencing debilitating behavior disorders
Promote the widespread dissemination of effective treatment technologies through highly specialized training and consultation
Facilitate the development and refinement of effective treatments through systematic evaluation of clinical innovation
Amajor focus of the Marcus Behavior Center is to provide highly specialized services to children with developmental disabilities who display severe destructive behaviors (e.g., aggression, self-injury, pica, and property destruction) that pose a substantial health risk to themselves or others. These problems occur in about 10% to 15% of children with autism or severe developmental disabilities. For these children the Marcus Behavior Center offers: Comprehensive diagnostic evaluation Parent training School consultation Intensive outpatient services, with 3 behavior therapists working with
each child for 6 to 20 hours per week Intensive classroom treatment Intensive day treatment which combines intensive outpatient and
classroom treatment Consultative services from experts with The Marcus Institute
(developmental pediatrics, genetics, psychiatry, nursing and social work) are available as needed
PEDIATRIC FEEDING DISORDERS PROGRAM

T he feeding disorders program is a comprehensive,
interdisciplinary program that provides evaluation and treatment of children with feeding impairments. The program combines the expertise of pediatric gastroenterology and behavioral psychology to help infants and children who are not consuming the appropriate nourishment to survive because of medical or behavioral
dysfunction.
THE MEN TAL HEALTH PSYCHOTHER APY CLINIC
T hrough the mental health clinic, Marcus Institute provides
individual psychotherapy, family therapy and behavioral management services for children and families. Group counseling and support groups are also offered. The Marcus Institute psychologists and licensed clinical social workers are deal with the behavioral, emotional, and social problems associated with neuro-developmental
disorders.
Services include:
Short and long term help for emotional and behavioral difficulties
Adjustment to a child's disabilities Play therapy Behavioral management skills Family Issues Counseling for siblings and parents Parent education groups
THE EVALU ATION CLINIC
T he Marcus Institute provides developmental, educational,
psychological and neuropsychological evaluation services for individuals from infancy through adulthood.
Specialized Expertise In:
Neonatal assessment and preemie follow-up Developmental evaluation of infants Feeding disorders Preschool assessment including identification of problems
typical of this age (e.g., PDD, language delays, attachment disorders) Academic and learning problems in school-aged children Learning disabilities and developmental disabilities

Neuropsychological assessment Speech language assessment

THE NEU ROPSYCHOLOGY EVALU ATION CLINIC
T he Neuropsychology Evaluation Clinic provides specialized
assessment for effects of neurologically-based disorders for individuals from infancy to 21 years. Neuropsychological testing may be necessary for any condition causing damage to the nervous system.

SPEECH LANGUAGE PATHOLOGY (SLP)
Communication disorder services are provided for pre-school
and school-aged children with a wide range of speech and language difficulties. Emphasis is placed on academic and social applications with extensive family involvement. Evaluations and therapy are provided by nationally certified and state licensed SLPs with extensive experience in related areas.

Services Include:

Comprehensive diagnostic evaluation Intensive rehabilitation Consultations Ongoing therapy

Symptoms of Disorders Include:

Unusually quiet infant or toddler Late talking Loss of speech or language skills Speech that is difficult to understand Difficulty with comprehension Poor oral motor skills for speech and feeding Repeating, hesitating, or prolonging sounds, syllables or words Chronic hoarse or a "different" voice

To initiate the referral process for any of the above programs contact:

Catherine Trapaniy, Ph.D. or Director of Education 1605 Chantilly Drive Atlanta, GA 30324 404/727-9556

Dr. Henry Roane 404/727-9422

ALBANY ADVOCACY RESOURCE CENTER
The Albany Advocacy Resource Center (Albany ARC) provides the following:
preschool services adult day program student summer enrichment adult residential services case management and workshops for professionals and parents Judevine training for consumers with autism and their families
Counties Served: Baker, Calhoun, Colquitt, Decatur, Dougherty, Early, Grady, Lee, Miller, Mitchell, Seminole, Terrell, Thomas and Worth
CONTACT INFORMATION
Annette Bowling, Director 2616 Point North Blvd. Albany, GA 31708-1026 912/888-6852

METROPOLITAN ATLANTA RESPITE COOPERATIVE (MARC)
A group of agencies including Georgia Community Support and
Solutions, ARC/Cobb, The Marcus Jewish Community Center of Atlanta, Douglas County Retardation Association, Metro Atlanta Respite and Developmental Services and Jewish Family and Career Services have banded together to form a respite cooperative in order to expand and create respite care choices in the
metropolitan Atlanta area for families of individuals with developmental disabilities including autism. The phil osophy of the cooperative is based on two principles:
1. Families have different needinstfhoerirecsopmitemcuanrietyatondmseheot uthldesheavneeeodpstioannsd
2. Families of individuals with developmental disabilities, regardless of their severity, should be provided with as many options as possible for accessing respite care.
T he program is based on a family choice model. Individuals who have been approved and funded, through their regional board, are able to choose respite care from the MARC pool of providers or any resource they know, formal or informal, to receive subsidized respite care. This can include agencies that are not participating in the cooperative or individuals that they know as long as enrollment criteria are met (for example: friends of the family, teachers, extended family, etc.) The only criteria placed on a family's choice of a provider is that they cannot live in the same home and they must have a fingerprint/criminal records check, current first aid and CPR certification. Formal providers would include agencies enrolled that are not a part of MARC. They must meet formal provider enrollment criteria.
Because the service is based on family preference:
Families can choose any agency or provider they want. Families can choose to use any or all respite options: staff
trained for the specific needs of the individual will be placed in that option. Respite care is arranged by issuing a voucher requested by the family or the agency that is providing respite care

Services are accessed by contacting the Lead Agency: Georgia Community Supports and Solutions. The complete, current agency options are:

MARC AGENCIES
Georgia Com munity Support and Solutions (Le ad A gen cy) Whitney Fuchs, Director
Jewish Family Career Services Webb Spraetz, Director
Cobb /ARC G ram ling House Ms. Jerrie Paschal, Director
Marc us Je wish Co mm unity Ce nte r of Atl an ta - Th e O rk in H om e Contact: Lee Furman

TYPE OF RESPITE
In Home and Host Family RRA Home/Richard's Home (call for address)

OFFICE LOCATION
1945 Cliff Valley Way Suite 220 Atlanta, GA 30329 404/634-4222

In Home and H ost Family (in your h om e or in a provide r's home)

4549 Chamblee-Dunwoody Road Atlanta, GA. 30338-6210 770/677-9341

Group Respite Home (call for address)

615 Roswell Street NE Suite 150 Marietta, GA. 30060 770/427-8401

Group Respite Home (call for address)

5342 Tilly Mill Road Dunwoody, GA 30338 770/424-7255

Douglas County Retardation Association--Robert Chadwick Home Con tacts: H aze l Ro berts
Delory Blackmon
Metro Atlanta Respite and Developmental Services Contacts: Melba Carr
Beverly Durden

Group Respite Home (call for address)
Family Based Weekend Resp ite

PO Box 1318 Douglasville, GA 30138 770/489-0065
1335 Kimberly Rd. SW Atlanta, GA 30331 404/691-5570

Currently, there are three levels of subsidies (fees) on the level
of care required by the individual. MARC agencies, in conjunction with the family, assess the individual and assign a level of care required by the individual.
DESCRIPTIONS OF LEVELS OF CARE
LEVEL I: Requires supervision only for safety issues/companionship--No behavior issues. Includes: medication assistance and apnea monitoring
LEVEL II:

Requires assistance in meeting the five (5) basic needs. Includes: feeding, bathing, dressing, toileting and transferring--can be total care and/or minor behavior issues. LEVEL III: Medically involved or excessive behavioral issues. Medical needs include: Tracheotomy suctioning, sterile procedures, any medically invasive care; but, not treatment. Behavioral needs include: Behaviors that are considered aggressive, selfabusive or destructive. Behaviors must be considered extensive and a barrier to typical respite care--examples are excessive biting, hair pulling, hitting, etc.
Families are responsible for a percentage of the cost of respite. The family's subsidy rate is determined by the age of the individual needing care, the level of care that is needed, the family's annual income and the number of people living in the home.
All respite is arranged and tracked through a voucher system. This system allows Georgia Community Support and Solutions to monitor and collect data. Most importantly, it is used to monitor who is using respite, how much respite is being used and who is providing the respite. It is suggested that families limit their use of respite to twenty-five (25) hours per month with a maximum of three hundred (300) hours per fiscal year or as the budget may allow. Families do not have to use respite every month, however, if it is not used one month, it does not carry over to the next month. Respite is on a first-come, first-serve basis depending on the budget.
MAY SOUTH

May South is one of more that 130 nonprofit programs of the May Institute, a network of behavioral healthcare, education and rehabilitation programs. All of the programs are fully accredited by the Joint Commission on Accreditation of Healthcare Organization.
M ay South serves people of all ages with many diverse needs, including mental health concerns, brain injuries and developmental disabilities. Their programs provide a wide-array of services, including: Home-based early intervention Special education School and family consultation Parent education and support Community living
T hey provide a broad range of services that are designed for individually diverse needs. May South serves children, adolescents and adults with a wide array of needs, including: Autism and related developmental disabilities Mental retardation Severe behavior disorders Brain injuries/neurological disorders Other behavioral health needs
M ay South designs its programs to serve individuals in the most appropriate, natural settings, often in their own homes, schools, and communities. Further, staff work with families and referral sources to build supports for successful transitions. May South has extensive experience in consultation; especially to public school systems. Their services range from individual student assessments to professional development and training.
M ay South's services stress the use of proven methods of treatment and teaching, based on a solid understanding of "best practices" from the latest research. From the start, specialized assessments give them a thorough picture of each individuals strengths and needs. Staff carefully track individual progress and adjust services to achieve desired goals.

CONTACT INFORMATION:

Jim Newton

1770 The Exchange, Suite 140

or

447 E.E. Butler Parkway

Atlanta, GA 30339

Gainesville, GA 30501

770/956-8511

770/297-0006

DEVELOPMENTAL DISABILITIES NETWORK

The Institute on Human Development and Disability
(IHDD) A University Affiliated Program
N ewly renamed and in a new position at the University of
Georgia, the institute had its start as the University Affiliated Program in 1965 when it was established as part of a federal initiative to improve the quality of life for people with disabilities and their families. The mission of the IHDD has evolved in the past few years into working with others to further the understanding of the abilities
of all people through education, research and public service. A unit of the College of Family and Consumer Sciences since 1989, IHDD is a member of the American Association of University Affiliated Programs that include some 60 universities and teaching hospitals around the nation. Activities of the IHDD are based on the principles of full community inclusion, respect for the unique characteristics of all individuals and families, the provision of competency- and value-based educational experiences and promotion of the provisions of the Americans with Disabilities Act (ADA) and IDEA. The Institute works in close partnership with the Governor's Council on Developmental Disabilities of Georgia, the Georgia Advocacy Office and the Institute's consumer advisory council. The IHDD at the University of Georgia has assumed a leadership role in the promotion of independence, productivity and integration, and inclusion into the community of individuals with developmental disabilities in Georgia by sponsoring:
The interdisciplinary pre-service preparation of students and fellows, including the preparation of leadership personnel.
Community service activities that include community training and technical assistance for people with disabilities, their families, professionals, paraprofessionals, students, volunteers and advocates. Training includes state-of-the-art direct services such as family support, individual supports, personal assistance services, education, vocational, clinical, health and prevention.
Dissemination of information and research findings which may include empirical validation of program activities and pre-service preparation; as well as, contributions to the development of new knowledge in the field of developmental disabilities.

CONTACT INFORMATION: Zolinda Stoneman, Ph.D., Director 850 College Station Road Athens, GA 30602-4806

706/542-3457; 706/542-6629 TTY FAX 706/542-4815 E-mail info@uap.uga.edu Web: www.uap.uga.ed

The Governor's Council on Developmental Disabilities for Georgia (DD Council)

Georgia's DD Council is the state planning council created by a
federal mandate through the Development Disabilities Act. The DD Council is a separate state agency administratively attached to DHR. The Council is charged with creating systems change for people with developmental disabilities and their families to: increase independence, inclusion, integration and productivity for
people with disabil ities through such activities as public policy research, analysis, and reform; project demonstrations; and, education and training. The DD Council promotes activities and creates opportunities which enable people with developmental disabilities to exercise their right to live, learn, work and play in the place and manner of their choice; and, to attain the highest level of independent living they can attain.
T he Council influences the direction of public policy at both the state and the federal level s to foster changes in service provision, to reflect the needs of individuals with developmental disabilities and to promote public awareness of those needs.
T he Council is not able to provide direct services to individuals with developmental disabil ities. Rather, the Council often acts as a facilitator for other agencies, together with consumers, parents, and advocates to develop coordinated public policy recommendations. The Council often uses its resources to commission research on policy issues and fund model programs. The Council also funds projects to inform decision-makers, legislators and the general public about developmental disabilities. The Council works with the IHDD and the Georgia Advocacy Office (termed sister-agencies) to coordinate their efforts in order to make the greatest impact possible.
T he Council maintains a library of resources that are available at no charge. For a listing of available publications, go to the Council Web Site at http://www.ga-ddcouncil.org/otherpubs.htm. Submit requests for publications via e-mail to mldolgoff@dhr.state.ga.us or fax publication requests to 404/657-2132.
CONTACT INFORMATION: Eric Jacobson, Director 2 Peachtree Street NW, Suite 3-210 Atlanta, Georgia 30303-3142 404/657-2126 FAX 404/657-2132 Web Site: http://www.ga-ddcouncil.org/
The Georgia Advocacy Office (GAO)

T he Georgia Advocacy Office is a private non-profit corporation having the mission of protection and advocacy for individual's with developmental and other disabilities and persons with mental illness throughout the state. GAO has been designated by Georgia's governors as the agency within the state to implement Protection and Advocacy legislation.
GAO consists of four separate programs: The Protection and Advocacy for Persons with Developmental Disabilities (PADD) program. Advocacy is provided to citizens with developmental disabilities throughout Georgia. The Protection and Advocacy for Persons with Mental Illness (PAMI) program. The Protection and Advocacy for Individual Rights (PAIR) program The Protection and Advocacy for Assistive Technology (PAAT) pro gra m.
GAO uses a combination of methods to secure advocacy for Georgians with disabilities including staff advocacy, legal advocacy, citizen advocacy, systems advocacy, information, referral, and community education and training. GAO has the capacity to pursue administrative, legal and other remedies where the rights of persons with disabilities have been violated. A grievance procedure is available to all clients, former clients and potential clients of the Georgia Advocacy Office upon request.
GAO provides advice and training on disability issues, information, referral and assistance to individuals with autism (and other disabilities) to their family and friends.
CONTACT INFORMATION: Georgia Advocacy Office Joyce Ringer, Ph.D., Director 100 Crescent Centre Parkway, Suite 520 Tucker, Georgia 30084 404/885-1234 (Voice/TTY) 800/537-2329 outside metropolitan area 770/414-2948 FAX e-mail: ringer@gao.org
GAO provides a book titled "Advocating for Your Child's Education" free to families upon request.
FEDERALLY FUNDED SERVICES

MED ICAID
What is Medicaid?
M edicaid pays for medical care for low-income people who are
age 65 and older, blind or have other disabilities, children, pregnant women and families with children.
Medicaid is a federal entitlement program of medical assistance for the poor. It is partially funded and administered by the state. States do not have to participate in Medicaid. However, once a state chooses to participate in the program it must comply with federal Medicaid requirements. States design their Medicaid programs within a range of eligibility and service options permitted under federal law. Thus, each state's Medicaid program is unique.
All applications for Medicaid, in Georgia, are made at the local office of the Department of Family and Children's Services (DFACS). Most Medicaid applications must be processed within forty-five (45) days. The state has sixty (60) days to process applications involving a claim of eligibility based upon disability.
T he Department of Medical Assistance (DMA) works with the Georgia Department of Human Resources (DHR) in administering some of the Medicaid programs. Eligibility screens are performed at county offices of the Department of Family and Children Services (DFACS), a unit of DHR.
Who is eligible for Medicaid?
In Georgia, Medicaid does not provide medical assistance to all poor
people. Individuals must meet both "categorical" and financial requirements. Categorical requirements define the kinds (i.e., categories) of people and families who can qualify for Medicaid. However, people who fall within these eligibility categories must also meet stringent income and resource standards which vary for different categories of people.
What categories of people are eligible for Medicaid?
In Georgia, the following categories of people are eligible for Medicaid. Parents and children Pregnant women and infants Children through age 18

People who are aged, blind or disabled Parents and Children
An entire family, adults as well as children, is Medicaid eligible if the children under the age of eighteen (18) are related to and living in the same home with the family member receiving Medicaid. Children under age 19 and pregnant women can also qualify under other categories of Medicaid. However, this is the only category of eligibility for adults who are not older, blind or have a permanently disability. For the family to be categorically eligible for Medicaid, the children do not have to be enrolled in school. This category of Medicaid is called Low Income Medicaid (LIM).
The following relationships meet the relative requirement: Parents (by birth, legal adoption or step relationship). Grandparents (up too great-great-great) Siblings (half, whole, step) Aunts/uncles (up to great, great-nieces/nephews) First cousins The children of first cousins, (first cousin once removed) Spouses of any person in the above groups even after death or divorce ends the marriage.
Children living with a legal guardian do not satisfy the relationship requirement. However, such children may still qualify for other categories of Medicaid eligibility. Children in foster care and state subsidized adoptions may be eligible for this type of Medicaid even though they do not live with one of the specified relatives.
Eligibility for Medicaid is not tied to welfare eligibility. Families receiving cash benefits through the Temporary Assistance to Needy Families Program (TANF) are likely to be eligible for Medicaid; but, only if they satisfy the Medicaid requirements which differ slightly from TANF's. Moreover, families ineligible for TANF may still be eligible for Medicaid. TANF benefits are time limited. In Georgia, a family may only receive benefits for a total of 48 months. Medicaid benefits are unlimited as long as the family meets the eligibility requirements. Although the state may terminate TANF benefits to families who fail to comply with TANF work and personal responsibility requirements, those sanctions do not apply to Medicaid benefits.
Pregnant Women and Infants

P regnant women income eligible in one month of pregnancy remain eligible throughout the pregnancy and 60 days postpartum. Infants are eligible for one year if the mother was eligible for and received Medicaid when the child was born and the baby lives in the same household as the mother. This category of Medicaid is called Right from the Start Medicaid. Children age 1-18
Children less than 19 are categorically eligible for Medicaid. They do not have to be living with a close relative. They do not have to be attending school. This form is also called Right from the Start. Children with too much income may be eligible for Georgia's new PeachCare program.
Aged, Blind and Disabled
People who are aged, blind or permanently and totally disabled are categorically eligible for Medicaid. Medicaid's definitions of people who are aged, blind and having a disability are the same one used by the Social Security Administration for Social Security and Supplemental Security Income (SSI) benefits. Aged is defined as 65 years of age or older. Bli ndness has a detailed statutory definition. Having a disability means that an individual is unable to engage in substantial gainful employment because of a medically determinable impairment likely to last twelve months or result in death.
In Georgia, SSI recipients are automatically eligible for Medicaid. Social Security Old Age and Disability Benefit recipients automatically meet Medicaid's categorical eligibility requirements of age, blindness or disability. Other people may also meet the statutory definitions of aged, blind or having a disability. However, they are only eligible for Medicaid if they satisfy Medicaid's financial eligibility requirements or have sufficient medical bills to be eligible for Medically Needy Spend Down Medicaid.
Children who received SSI benefits prior to August 22, 1996
As part of the recent welfare reform initiatives, Congress made it more difficult for children with disabilities to qualify for SSI. As a result of this change, a substantial percentage of the children receiving SSI had their benefits terminated. To ameliorate the harsh impact of the SSI change, these children continue to be eligible for SSI-linked Medicaid even though they no longer meet the SSI definition of having a disability. They must still satisfy the financial and other non-disability SSI eligibility requirements to continue to receive Medicaid.
Do income and property affect eligibility for
M e d i c ai d ?

Because Medicaid is a welfare, need-based program, a person must not only be categorically eligible; but, also, must fall within strict financial guidelines-for both income and property in order to be eligible. Some financial eligibility standards are set by the federal government, some are set by the states and still others are chosen by states from within a range of options available under federal law. The financial limits can be confusing because both income and resource limits vary depending upon the type of categorical eligibility-parents and children, pregnant women, children or people who are aged, blind, or have a disabili ty.
Some people may fit within several different categories. If someone has too much income or resources to qualify in one category, they may be able to establish eligibility under a different category. The state should consider an application for Medicaid under all the categories that may apply.
Example: Mom and ten-year old Katie apply for Medicaid. Mom is six months pregnant. Katie has a disability. Mom and Katie are categorically eligible as parent and child. Mom is categorically eligible as a pregnant woman. Katie is categorically eligible as a child and because she has a disability. Each of these categories of Medicaid assistance has different income and resource requirements. If Mom and Katie have too much income or resources for one category of Medicaid, they should be considered for other categories for which they may be eligible.
How much income can a person have and still get
M e d i c ai d ?
T he income and property limits vary for different categories of
Medicaid. These financial limits can be confusing because both income and resource limits vary depending upon the type of categorical eligibility and even within the various categorical groups. Moreover, most of the income limits change once a year in either January or February. For an updated income chart, contact your
local DFACS office. Some people fit within several different categories. If someone has too much income or property for one category, consider other possibili ties.

Are there any special Medicaid programs which help
children with severe disabilities remain in the
comm unity?
Children under age 18 who are financially ineligible for SSI because of their parent's income; but, who meet the SSI disability requirements and are in need of home nursing care are financially eligible for Medicaid if they choose to remain in the community. Georgia has a Deeming waiver, (previously called the Katie Beckett waiver), which allows the state to waive; i.e., ignore, the income and resources of these parents of children with disabilities for purposes of Medicaid eligi bility.
T o be categorically eligible, "Deeming waiver" children must meet the basic level of care admission requirement to be eligible for Medicaid nursing home care. The cost of the child's care in the community must be not more that the cost of nursing home care would be.
DEEMING WAIVER (Previously called Katie Beckett Waiver)
Basic Eligibility Criteria
The child must be DISABLED The child must be a resident of Georgia The child must be a U.S. citizen or an alien lawfully admitted to be a
permanent resident or otherwise permanently residing in the U.S. under color of law. The child must assign their rights to all payments of medical benefits from all Third Party Resources (medical insurance) to the Georgia Department of Medical Assistance to the extent medical expenses are paid by the Medi caid program. The child must apply for and accept any benefits for which they may be entitled. The child must furnish or apply for a Social Security Number.
Special Eligibility Criteria
The child must be under 18 years of age AND The child must be chronically impaired to the extent of being a suitable
candidate for nursing home care AND The child must be receiving appropriate home care less costly that
nursing home care AND The child must be ineligible for SSI in a private living arrangement due
to income and/or resources including that deemed from the parents.

How are Medicaid services accessed?
E ach month, all members of the family eligible for Medicaid receive
a Medicaid card (a computer printout)in the mail. The card should be shown to the provider of medical services before services are provided. The health care provider will make a copy of Medicaid card and bill the state Medicaid program for the services. Some services require small co-payments, but others do not. Pregnant women
and children never have to pay anything. No co-payments are required for emergency care for those enrolled in an HMO.
In Georgia, the types of medical care covered by Medicaid include:
X-rays and lab tests Checkups and preventive care for children Family planning Home health services Physical, speech and occupational therapy Mental health services Substance abuse treatment Orthotics and prosthetics Durable medical equipment (wheelchairs, walkers, etc.) Nursing home care Intermediate care facility services for people with mental
retardation (ICF/MR) Dental services Vision care Home or community-based services including adult day
rehabilitation, alternative living services, and home delivered services to individuals who would otherwise need nursing home or other institutional care Hospice care Transportation to and from necessary care.
These are called "covered" services. If the Medicaid program refuses to pay for a service because it is "not covered," you should check with the Department of Medical Assistance for information regarding Policies and Procedures. This department can provide details on each covered service. Then review the federal Medicaid regulations, which provide detailed definitions of the services that Georgia's Medicaid program must provide.

What screening, diagnosis, and preventative services
does Medicaid provide for children?
T he federal Medicaid statute requires the state to provide an Early
and Periodic Screening, Diagnosis and Treatment (EPSDT) program that delivers a full range of preventive, diagnostic and treatment services to children under the age of 21. EPDST includes periodic well-child medical, dental, vision, and hearing check ups, immunizations, laboratory tests, and health education. Diagnostic and treatment
services are covered for both newly diagnosed conditions as well as pre-existing conditions. Moreover, EPDST requires aggressive outreach efforts to inform children and their parents about the importance of preventive care and the availability of EPDST services.
Health Check is the early and periodic screening component of
Georgia's EPDST program. It includes comprehensive physical examinations, health and developmental histories, developmental assessments, vision and hearing tests, lab procedures and lead risk assessments at regular age appropriate intervals.
Because of EPDST, Georgia must cover medically necessary diagnostic and treatment services for children under 21 years of age including mental health care, vision and dental services. Medicaid eligible services that are not covered for adults are covered for children.
M edicaid must pay for all medically-necessary care for children under 21 that falls within one of the broad categories eligible for federal Medicaid reimbursement. Federal law divides Medicaid services into two categories: mandatory and optional services. Under EPDST the state must provide optional as well as mandatory services to children under age 21. This means that children are eligible for some types of services that are not provided to adults. For example, Georgia's Medicaid program does not cover hearing aids for adults; but, does cover them for children.
T he state may, and does, place limits on medically necessary services for adults. First, all services for adults must fall within the broad categories of care covered by Georgia's Medicaid program. See the list of covered services at the beginning of this chapter. Moreover, some services are specifically excluded even though they fall within the broad categories of care covered by Medicaid. For example:
Cosmetic surgery Hearing aids Routine foot care including removal of corns and warts

Dental services are limited to emergency care and extraction of teeth
Vision care does not include refractive exams or eyeglasses.
T he federal Medicaid regulations provide detailed definitions of the services that Georgia must cover. If the state refuses to approve or pay for care because the service is "not covered" or specificall y excluded from a covered category first check the Department of Medical Assistance Policies and Procedures which provide details on each covered service. Then review the federal Medicaid regulations which provide detailed definitions of the services that Georgia's Medicaid program must provide.
Second, the state places some numerical limits on medically necessary services for adults:
Physician services - twelve visits per year Home health, physical, speech and occupational services
seventy-five visits per year. Prescription drugs - five per month
However, only the numerical limits on home health care are absolute. Medicaid will pay for physician visits and prescription drugs above the numerical limits when they are medically necessary and medically justified. The treating physician needs to request extra services and explain why they are medically necessary. If the request for additional services is denied, the recipient has a right to a fair hearing to contest the decision.
Both durable medical equipment and prescription drugs each have a formulary list of approved items. Medicaid will pay for drugs and medical equipment not listed in the formularies when they are medically necessary and the listed items are an inadequate substitute. The treating physician needs to request prior approval for items not on the formularies and justify their need. If the prior approval request is denied, the recipient has a right to a fair hearing to contest the decision.
What can someone do if he or she is denied Medicaid?
Ask for a fair hearing. Medicaid recipients can appeal denials of eligibility and delays in deciding eligibility. The time limit for filing an appeal is thirty (30) days from the date of denial.

M edicaid covers the rental or purchase of a whole range of medical equipment and supplies including hospital beds, wheelchairs, oxygen equipment and walkers. Medicaid also covers devices such as artificial limbs, braces, glasses and artificial eyes. Medicaid does not cover hearing aids for adults. Medicaid does not cover equipment, which is primarily and customarily used for non-medical purposes, such as air conditioning or bathtub lifts.
F or children, Medicaid covers any medical equipment or devices that are medically necessary. For adults, Medicaid has a formulary of approved medical equipment and devices. Some items are specifically excluded from coverage. Items not on the formulary but not specifically excluded may be covered for adults when medically justified by the physician. Equipment and supplies must be prescribed by a physi cian. Prior approval is required for many, if not most, items.
M edicaid covers outpatient and inpatient mental health and substance abuse treatment, and habilitation care for those with mental retardation. Covered outpatient services include diagnosis, therapy, counseling, medication administration and day treatment. Medicaid provides short term acute care, inpatient psychiatric care for children under age twenty-one and nursing home care in intermediate care facilities for those with mental retardation.
F or adults, Medicaid pays for psychiatric evaluations and some forms of psychiatric therapy provided by a licensed physician or psychiatrist. Other outpatient mental health services for adults must be provided by community mental health centers, now called Community Service Boards (CSB). Adult mental health outpatient services must be clinic-based. They may not be provided at the person's residence.
F or children under age twenty-one, outpatient services do not have to be clinic-based and may be provided at the child's residence or other medically appropriate location as long as it is not a public institution, freestanding psychiatric hospital or nursing home. Services may be provided by community mental clinics or any private licensed psychologist who agrees to participate in Medicaid.
M ental health, mental retardation, and alcohol and drug abuse screenings and services are required as part of the EPDST program for children under age twenty-one. EPDST mandates that Georgia's Medicaid program cover all medically necessary mental health, mental retardation and substance abuse for children under age twenty-one. The state may not place an absolute limit on the number of hours of services for children. For details on the EPDST requirements, see the section on Medicaid services for children.

Inpatient hospital care for mental illness, mental retardation, and alcohol and drug treatment is covered for adults and children. Partial hospitalization services designed to prevent hospitalization are also covered. However, federal law prohibits Medicaid from reimbursing institutions for mental illnesses. This means that Medicaid does not cover mental health and substance abuse services provided to adults in a nursing home, public mental institution or free-standing psychiatric facility.
M edicaid also pays for long term inpatient care provided in intermediate care nursing home facilities for those with mental retardation (ICF/MR). In addition, Georgia has a waiver for certain provisions of the federal Medicaid law to allow it to provide home and community-based services to those who are mentally retarded or have other developmental disabilities like cerebral palsy, epilepsy or autism which result in impairment of general intellectual functioning or adaptive behavior and who, but for the home services, would be institutionalized in a hospital or nursing home. The mental retardation waiver program allows Georgia's Medicaid program to pay for support services li ke respite care, personal support services, day habilitation services, supported employment services and specialized equipment and supplies that are not normally covered by Medicaid. To apply for the mental retardation waiver, contact your local MHMRSA regional board.
MEDICARE

What is Medicare?
M edicare is a federal health insurance program. It helps pay health care costs for people 65 and over, people who have received Social Security disability payments for at least 24 months and those with end-stage renal failure. No income or resource test is required for Medicare. However, Medicare imposes substantial premiums, deductibles and cost-sharing requirements.
M edicare has two parts. Medicare Part A-Hospital Insurance helps pay for in-patient hospital care, skilled nursing home care, home health care and hospice. Medicare Part B-Supplementary Medical Insurance helps pay for doctors' services, outpatient hospital services, home health care and a number of other medical services and supplies that are not covered by Medicaid Part A.
M edicare Plus Choice (Part C) offers Medicare beneficiaries the alternative of joining a managed care plan such as an HMO. In Medicare+Choice beneficiaries must use the managed care organization's doctors and other health care providers. In return, the beneficiary's out-of-pocket costs are generally lower than n the Medicare fee-for-service system.
M edicare is administered by the Health Care Financing Administration (HCFA) of the U.S. Department of Health and Human Service. Local Social Security Administration offices take applications for Medicare and provides general information about the program.
What services does Medicare cover?
M edicare coverage has two parts. Medicare Part A-Hospital
Insurance covers inpatient care, skilled nursing home care, home health care and hospital care. Part B-Supplementary Medical Insurance covers doctor services, therapy services, outpatient hospital services, diagnostic tests, durable medical equipment, ambulance services and various other medical supplies and
services. Medicare does not cover most routine physical examinations, glasses, hearing aids or custodial care in nursi ng homes or board and care homes.

Who is eligible for Medicare?
M any people are eligible for Medicare Part A without paying a premium. These are people who are:
65 or older who receive or are eligible to receive Social Security or Railroad Retirement benefits
65 or older who had Medicare-covered government employment, and their spouses
People with disabilities who have received Social Security or Railroad Retirement disability benefits for twenty-four months
Kidney dialysis or kidney transplant patients
People who are eligible for Medicare Part A without paying a premium may enroll in Medicare Part B by paying a monthly premium. However Social Security and Railroad Retirement recipients must notify the Social Security Administration if they do not want Part B coverage. Otherwise, Part B premiums are automatically deducted from their monthly Social Security or Railroad Retirement check.
Certain other people may enroll in Medicare Part A by paying a monthly premium. To be eligible to "buy-in" to Part A, individuals must be 65 or older and a U.S. citizen or a legal alien who has lived in the United States continuously for at least five years. People buying into Medicare must purchase both Part A and Part B Medicare. They may not purchase Part A only. A number of Medicaid programs exist to help pay the cost of Medicare Part A and Part B premiums for low-income people.
What medical services does Medicare Part A cover?
M edicare Part A covers the following services when they are
medically necessary:
Inpatient care Skilled nursing home care Home health care Hospice care
Spell of Illness
M edicare Part A services are measured through benefit periods, also called spells of illness. The number of days Medicare covers is limited during each spell of illness. Once the limit is exceeded, the patient is responsible for all charges.

Aspell of illness begins the day a patient is admitted to a hospital for inpatient care. It ends when the patient is out of the hospital or skilled nursing home for 60 continuous days including the day of discharge. It also ends if a patient is in a skilled nursing home for 60 straight days without receiving any skilled nursing home care. Once a spell of illness benefit period ends, a new one begins. No limit exists on the number of benefit periods an enrollee may have.
Inpatient Care
M edicare Part A covers up to 90 days of medically necessary inpatient care per spell of illness. If a patient uses all 90 days of covered care during a spell of illness, Medicare also covers an additional 60 lifetime reserve days. Lifetime reserve days, unlike spell of illness days, are not renewable. Once used, lifetime reserve days are gone.
Part A coverage includes a semi-private room, meals, nursing and related services; use of hospital facilities; medications, medical supplies, appliances and equipment normally furnished by the hospital; operating room and recovery room costs; and other diagnostic or therapeutic items or services normally furnished by the hospital, including rehabilitative services such as physical therapy and speech therapy.
Skilled Nursing Home Care
M edicare Part A pays up to 100 days of skilled nursing home care per spell of illness. To qualify for Medicare payment the beneficiary must be admitted to the skilled nursing home within thirty days of a hospital stay lasting at least three days (not counting the day of discharge) to provide care for a conditions which was treated in the hospital.
M edicare only pays for nursing home care when skilled nursing or skilled rehabilitation services are needed on a daily basis. The covered services include nursing care, semi-private room, and meals; physical, occupational and speech therapy; medical supplies, drugs, use of appliances such a wheelchair; and other health services generally provided by a skilled nursing facility.
Home Health Care
Home health care is covered when skilled nursing care is needed on a parttime or intermittent basis. No prior hospital stay is needed and there is no limit on the days of coverage per spell of illness.

Covered home health services include skilled nursing care, physical therapy and speech therapy. Occupational therapy and medical social services may also be covered if done under the direction of a qualified person and ordered by a physician. Services of a part-time home-health aide to care for the personal needs of a patient may also be covered.
Hospice care
M edicare Part A hospice care covers services aimed primarily at providing pain relief, symptom management and support services to terminally ill people and their families. Hospice care is covered when a doctor certifies that the beneficiary is terminally ill and the patient chooses to receive care from a hospice instead of standard Medicare benefits for terminal illness.
What medical services does Medicare Part B cover?
M edicare Part B is often thought of as coverage for doctor
services. However, Part B covers a wide range of medically necessary outpatient services and items including:
Physician services provided in the doctor's office, at home, in a clinic, hospital or nursing home
Outpatient hospital services Mental health services Pap smears, mammograms, prostrate and colorectal cancer screening,
bone mass measurement and diabetes self-management X-rays and laboratory tests Prescription drugs and biologicals that cannot be self-administered Transfusion of blood and blood components Flu vaccinations, prosthetic devices, ambulance services Physical therapy and speech pathology services Home health care Medical supplies such as surgical dressing, splints, and casts Durable medical equipment such as crutches, wheelchairs and blood
pressure monitor
What services are not covered by Medicare?
M edicare only covers services that are medically necessary. However, many types of medically necessary services and supplies are not covered by Medicare. Medicare does not cover:
Custodial care Personal comfort items

Routine check-ups (except pap smears, mammograms, prostrate and colorectal cancer screening, bone mass measurement, and diabetes self-management are covered)
Intermediate care in a nursing facility Full time nursing care at home Hearing aids, eye glasses & examinations for prescribing/fitting them Prescription and non-prescription drugs Private duty nurses Chiropractic services Cosmetic surgery Dental care Private rooms Orthopedic shoes Services covered by employer group health plans when the plan is the
primary payer.
How does someone enroll in Medicare?
A nyone eligible for Medicare Part A because he or she is 65 and
older and receiving Social Security benefits or Railroad Retirement benefits or has been receiving Social Security disability benefits for 24 months, is automatically enrolled in both Part A and Part B. No application is needed. A Medicare card is mailed about three months before the Medicare eligibility begins. To decline
coverage under Part B, you must contact the Social Security Administration in your area.
How is Medicaid different from Medicare?
M edicare is a federally-funded health insurance program
operated by the Social Security Administration. It is uniform across the country. The state has no role in the Medicare program.
M edicaid is state and federally-funded. In Georgia, the federal government contributes two-thirds while the State of Georgia finances one-third of the state's Medicaid budget. The state must cover certain groups of people and must provide certain Medicaid services. However, states have a range of optional groups they may offer. As a result, each state's Medicaid program is unique from all others.
M edicare helps pay health care costs for people 65 and over and for people who have received Social Security disability payments for at least 24 months. There is no income or resource test for Medicare. However, Medicare imposes substantial premiums, deductibles and cost-sharing requirements.

M edicaid is a needs-based welfare program with strict financial requirements. Medicaid requires no premiums or deductibles although many services require small co-payments. What special Medicaid programs exist for Medicare beneficiaries?
A ll Medicare beneficiaries qualify as categorically eligible for
Medicaid because they are aged, blind or disabled. Some Medicare beneficiaries have incomes low enough to be financially eligible for Medicaid or Medically Needy Spend Down.
Low income Medicare beneficiaries with incomes above the limits for regular Medicaid or Medically Needy Spend down Medicaid may still qualify for limited Medicaid benefits to help pay the out-of-pocket costs charged by Medicare costs only. This limited Medicaid helps with Medicare costs only. It does not pay for prescription drugs or other services not covered by Medicare. Medicare recipients with limited Medicaid get a red Medicaid card.
SOCIAL SECURITY DISABILITY BENEFITS (SSDI)

What is the Definition of Disability?
D isability under Social Security is based on a person's inability to
work. A person will be considered to have a disability if he/she is unable to do any kind of work for which he/she is suited and his/her disability is expected to last for at least a year or to result in death.
Wha t is the Social Security Disability
Benefits Program?
T his is a federal program administered by the Social Security
Administration (SSA) where people who meet eligibility criteria receive cash benefits based upon their work history and other eligibility criteria.
Who can receive Social Security disability
benefits?
A person can receive Social Security disability benefits at any age
if he/she meets other eligibility requirements. If a person is receiving disability benefits at age 65, his/her disability benefits become retirement benefits although the amount remains the same.
Certain members of a recipient's family also may qualify for benefits on his/her record. They include:
An unmarried son or daughter, including an adopted child, or in some cases, a stepchild or grandchild. The child must be under age 18 or under age 19 if in high school full time.
An unmarried son or daughter, age 18 or older, if he or she has a disability that started before age 22. (If a child with a disability under age 18 is receiving benefits as a dependent of a worker who is retired, deceased or has a disability, someone should contact Social Security to have his or her checks continued at age 18 on the basis of disability.)
A spouse who is age 62 or older or any age if he or she is caring for a child who is under age 16 or has a disability and is also receiving checks.
Certain family members may qualify for disability benefits if a recipient should die. They include:

A widow or widower with a disability who is age 50 or older. The disability must have started before the recipient's death or within seven years after the recipients death. (If a former recipient's widow or widower caring for their children receives Social Security checks, she or he is eligible if the onset of the disability occurs before those payments end or within seven years after they end.)
Filing Your Claim
T o file a claim for benefits with the Social Security Administration,
a person must complete an application. Applications can be taken over the phone for people who cannot travel to the office. A person should be prepared with the necessary materials before calling the Social Security Administration. Additional medical information may be needed before the Disability Determination
Services team can decide a person's case. If it is not available from a person's current medical sources, he/she may be asked to take a special examination called a "consultative examination." A person's doctor or the medical facility where he/she has been treated is the preferred source to perform this examination. Social Security will pay for the examination or any other additional medical tests a person may need, and for certain travel expenses related to it.
Social Security's rules for determining eligibility differ from those in other government and private programs. However, a decision made by another agency and the medical reports it contains may be considered in determining whether a person is determined to have a disability under Social Security rules.
Once a decision is reached on a person's claim, he/she will receive written notice from the Social Security Administration. If a person's claim is approved, the notice will show the amount of his/her benefit and when payments start. If it is not approved, the notice will explain why.
If a person is still determined to have a disability by Social Security at the age of 65, his/her disability benefits stop. He/she will receive regular Social Security benefits for retirement instead.
How to Apply

A person should apply at any Social Security office as soon as
the onset of the disability. A person may file by phone, mail or by visiting the nearest office. Remember that Social Security disability benefits will not begin until after five full months after Social Security recognizes the onset of the disability. This "waiting period" begins the first full month after the date Social Security
determines as the onset of the disability.
Getting in Touch
T he Social Security Administration offers several ways to be contacted. Call, visit, surf the net, FAX or write Social Security.
C all SSA's toll free number, 1-800-772-1213, from 7 a.m. to 7 p.m., Monday through Friday. A representative will answer questions, provide information about Social Security programs, mail publications, or make an appointment at the local office for an in-person visit.
Social Security lines are busiest early in the week and early in the month, so if the business can wait, it is best to call at other times. By using a touch-tone phone, a person can access recorded information and services 24 hours a day, including weekends and holidays.
If a person is deaf or hearing impaired, he/she can call SSA's toll-free TTY number, 1-800-325-0778, between 7 a.m. and 7 p.m., Monday through Frida