Family focus: early intervention in Georgia, 2006 January

EARLY INTERVENTION
FOCUS TOPIC:
I N TA K E

Family Focus

Early Intervention In Georgia

VOLUME 1, ISSUE 1

JANUARY 2006

SPECIAL POINTS OF INTEREST:
Getting Started--The Intake Process
Family Focus
Evidence-Based Early Intervention
Conceptual Framework
Family Networking
Family Resources

INSIDE THIS ISSUE:

Getting

2

Connected:

BCW Families

Discussion Group

Provider's View 3
What's a Person 4 to Do? Roles and Expectations In Early Intervention

Conceptual

5

Framework

Alphabet Soup: 5 Words to Know

Featured Family 6 Resources

Family Focus by Myra Buck, BCW Parent

My son, John, has autism. Before we had the diagnosis, we contacted Babies Can't Wait for early intervention. Upon hearing about Babies Can't Wait initially from a friend, my impression was they would come and work with my son in a way in which I would have little or no part. I was very pleased that in the district I live in I was given the option of either the traditional model of service delivery or the "new" coaching model. I immediately decided on the coaching model because I was interested in a collaborative relationship. I knew what John needed and was seeking additional information that the team could provide so that I could make informed decisions that were related to our family priorities.
Sometimes for a parent it is easier to want a quick fix where someone will just come in, spot the problem, and tell the family how to fix it. In this model, however, John's team evaluated him and also gathered information from me about our family and

our activities. They would then ask what goals I had for my son and the priorities of our family due to what we considered as developmental delays. By doing this, instead of spotting what they viewed as the problem, John's team has helped our family to greatly improve John's everyday life in the context of our daily activities, as well as with extended family, and at his preschool program. Our life as a family has also greatly improved due to the supports we have been given, which are relevant to him, and due to our family, because everyone in his life is a team member.
John's team meets weekly. I know his progress and my concerns are discussed with the whole team. I know I can contact the team at any time to request any additional support or to ask

any questions. My coach comes to our home and to the preschool program to share her expertise so that we can develop strategies that benefit John. As John's parent, I know what works well for him and for our family's lifestyle. Working together, the coach and I can use her knowledge of child development and my knowledge of my child to discern strategies to best meet John's and my family's needs. Working together, we develop strategies that can be practiced and used in the context of our daily life. Because of the support from the coaching team, we are now able to go places and do things that autism used to keep us from going and/or doing. John is successfully involved in activities that he would not have been able to participate in without the support we've received from BCW.

"Instead of spotting what they viewed as the problem, John's team has helped our family to greatly improve John's everyday life in the context of our daily activities." Myra Buck, Parent

Getting to Know You: The Intake Process

by James Ernest, Ph.D., BCW Technical Assistance (TA) Unit

Background Information Every state has an early intervention program. In Georgia, this system is called Babies Can't Wait (BCW). BCW is part of Georgia's Department of Human Resources, located within the Division of Public Health. Babies Can't Wait, Children's Medical Services (CMS) and the High Risk Infant Follow Up Program

together make up the Office of Children with Special Needs. As many people know, BCW is dedicated to providing the most effective supports and resources to young children with special needs and their families.
The first part of this process is "Intake." This can be the most important part of BCW and

leads to (1) assessing and evaluating whether your family is eligible for BCW services, (2) providing supports and services to your family, and (3) finally helping you and your child transition out of BCW. We will focus on these other parts of the process in future newsletters.
(Continued on page 3)

PAGE 2

Getting Connected by Karen Addams, Parent Educator

BCWFamilies Discussion Group
BCWFamilies is an online discussion group (listserv) for families with children currently enrolled in the State of Georgia's Babies Can't Wait early intervention program. The purpose of the group is to provide the opportunity for families to share, support and educate each other during the early intervention phase of their children's lives. To join, send an email to: BCWFamiliessubscribe@yahoogroups.com or visit the website at http://groups.yahoo.com/group/BCWFamilies.

BCWFamilies
The 21st Century Way to Get in Touch with
Other Parents!

What is an Online Discussion Group?

When using e-mail, you are communicating with one individual or a small group of people known to you. Online Discussion Groups offer the opportunity to communicate with large groups of people about specific topics of interest to specific groups.

BCWFamilies is an

online discussion

group.

Messages

posted to BCWFami-

lies are sent automati-

cally to the mailbox of

each member. Each

member can then read

and respond to your

message by replying to

BCWFamillies.

FAMILY FOCUS

Karen Addams, a BCW Parent Educator started the group in April 2000 as a way for families to connect with one another without ever having to leave their homes. "As a parent of a young child with special needs, I often felt isolated and in need of support. It was so difficult to get out and attend meetings when my child was young, but I could read or write emails anytime, day or night. BCWFamilies is a unique opportunity for parents, whose schedules are often dictated by the needs of their young children, to connect with one another."
What started as a very small group of families from one county has grown into a statewide group of families whose children have a variety of special needs. In 5 1/2 years, BCWFamilies has provided the opportunity for nearly 400 families from across Georgia to meet one another and share resources, concerns, and successes. The following samples of postings to the discussion group show the many ways the group helps families to interact.

(Names and identifying information have been changed to protect confidentiality)
Hello! I was referred to BCW because of my son's developmental delays. James was born premature at 28 wks. He weighed only 1 lb, 3 oz and was in the hospital for 3 1/2 mos. James is now 10 months old, and he is behind in his gross motor skills. Before we started with Babies Can't Wait, he did not even roll over. After 5 weeks in the program, he can roll, do push ups, and sit unassisted. I have learned so much from the therapists who come to our home. I am happy to find this group so that I can learn more from other parents.
My son is almost 2 1/2 years old and has Down Syndrome. He will soon be transitioning out of BCW. We are hoping to find an inclusive program for him - one that has both children who are typical and those with special needs. Anybody have any information to share?
Can anyone explain the difference between Katie Beckett Medicaid and Peachcare? Thanks,

I enjoy reading the list and postings. It helps when all this is so new.
I have been involved with BCW for a year and a half now, and it is a fantastic program that I am extremely thankful for. It has made a tremendous positive difference for my daughter. You want to try to learn as much as possible and be involved with your child during visits. You need to take advantage of those everyday natural learning opportunities and not just wait for the therapist to work with your child once or twice a week. Good luck!
My twins will be receiving assistance from BCW very soon. We have been assigned a Service Coordinator. My daughter has a moderate gross motor delay, and my son has overall development delays. He is currently on a vent, g-tube, and trach. Any information or advice about the BCW program is appreciated.

How to Participate in an Online Discussion Group

Here are some general rules of the road when participating in BCWFamilies Discussion Group.
1. When first joining the group, it might be helpful to go back read past posts (archives) so that you can see what subjects have been discussed in the past.

2. When responding to a message, you can choose to respond to the entire list or to an individual member. Personal messages should not be sent to the entire group.
3. Avoid sending messages that are no more than gratuitous replies to replies. (Example:

Don't send a "thanks" or "Me too" message through the list. Send something like that directly to the person you're thanking.)
4. Resist the temptation to "flame" others on the group. Remember that these discus-
(Continued on page 4)

PAGE 3

Provider's View by Anna Spangler, Service Coordinator

My experience with the intake process has significantly changed since August 2003 when I began participating in the Primary Coach Model of Service Delivery. My focus as a service coordinator has shifted from emphasizing the necessary paperwork I needed to complete to focusing on building a relationship with the family, gathering information from the family about what is important to them, and sharing information about the model and Babies Can't Wait. Relationship building has always been a priority but it is now the first priority and the necessary paperwork is the last step in my intake home visit. Yes, my home visits do take longer than before, but I am gathering the information to be shared with the team, and at the same time decreasing the family's stress of having to answer the same questions again and again. My time is spent listening to the

family's story by asking what they are comfortable sharing about their child and family, asking about their priorities for their child and family, and about their challenges within their daily routines. The focus is on the assets of the child and family, and what they would like to see go better within their daily routines.
At the same time, I am asking what the family has been told about Babies Can't Wait, what their expectations are of the program, and how we can be of support to their family. During this conversation with the family, we talk about what they like to do as a family, activities they would like to try with our support, what their child does well, what their child is learning right now, what makes their child smile, and what frustrates their child. Personally, I had a difficult time asking about family's hopes and

dreams for their child because I was uncomfortable with the question. This question is included in a revised Intake/Determination of Eligibility Form which is in the process of approval for future statewide use. I have been amazed at the answers I have received. Some parents/caregivers think for a few minutes about the question and others are able to answer immediately. Regardless, the answer is always heartfelt and telling.
We also discuss their individual family strengths and really think about their informal resources. I continue to discuss formal supports in the community as well as statewide resources just to make sure the family is aware of what their community has to offer. But instead, we focus on their informal
(Continued on page 5)

"My focus as a service coordinator has shifted from emphasizing the necessary paperwork I needed to complete to focusing on building a relationship with the family, gathering information from the family about what is important to them, and sharing information." Anna Spangler,
Service Coordinator

Getting to Know You: The Intake Process cont.

(Continued from page 1)
What is Intake? With a name like "intake" you would think this process is all about someone going in, taking a family's information, and getting back to the family at some later point. Nothing could be further from the truth. This is one of the most important parts of a family's travel through the BCW process and sets the stage for the important relationships that are formed. The strength of BCW comes with the relationships formed between the people in a child's life (the child, mom, dad, sister, grandpa, Ms. Smith the neighbor, or Mr. Jones, the child's childcare teacher) and the professionals who are seen as resources for the family. Intake is just another way of saying "we would like to get to know you and your family."

How Does This Affect Me The first time someone from BCW contacts the family, a Service Coordinator (SC) will get in touch with the family and set up a time to meet at a time that is convenient to the family. During this meeting--the intake meeting--the service coordinator will share information about BCW, answer any questions that you may have, and gather some important information about your child and family. The SC will ask about the child's feeding, sleeping, movement, communication, and a whole host of other abilities. He or she will ask about the people you and your child spend time with, what some of your family's favorite activities are, and what goes on during your typical day and during special events (going to the park, visiting grandma, or going to the football

game). Finally, the SC will ask about what some of your dreams are for your child and family as a whole and about what is going well and what is not going so well at the moment. All of this information will be used to set up a plan for how BCW will support the important people in your child's life.
Probably the most important thing to remember is that BCW is not just about the child, but about the family. This is why Babies Can't Wait focuses on the types of things you and your child do during the day. It is not about coming into your home and treating your child: BCW is about supporting you and your child to be able to do the types of activities and routines that all families engage in every day of the week. You are the reason why BCW is here, so if and when you have questions, please ask.

FAMILY FOCUS

PAGE 4

What's a Person to Do?
Roles and Expectations In Early Intervention

NUTS `N BOLTS
ROLES AND EXPECTATIONS IN
EARLY INTERVENTION
AT INTAKE
FOR PROVIDERS: KNOW AND PRACTICE BABIES CAN'T WAIT STANDARDS AND PHILOSOPHY INFORM FAMILIES
ABOUT THE PROGRAM
FOR FAMILIES: SELECT THE DAILY
ACTIVITIES AND ROUTINES
HELP IDENTIFY CAREGIVERS DETERMINE IF BABIES CAN'T WAIT IS A GOOD MATCH
Adapted from Infant and Toddler Connection of Virginia: Philosophy and Considerations for Individualizing Early Intervention Services 2003

Part 1: Intake Process
Knowing what to expect may help your family feel more comfortable as you enter the Babies Can't Wait program and allow you to take a more active role in the early intervention process.
During the intake process, your confidence (trust) and competence (knowledge) in the early intervention process will begin to increase. You will become familiar with what you can expect as a family and what you can expect from the other members of your early intervention team such as your service coordinator and providers.

tor will help you understand the philosophy or conceptual framework that guides the Babies Can't Wait program.
Beginning with the initial interview, the type of information being requested might seem different from what you have been used to sharing at the doctor's office or with other programs.

Your service coordinator will provide you with a thorough explanation of the Babies Can't Wait program. He or she will share the purpose of intervention and the steps that you will be going through to see if your child is eligible for Babies Can't Wait. Your service coordina-

The questions will be used to help the team learn what is important to you and your child. They may ask about what daily activities that you need to do. What activities do you want to do?

You might be asked to think about the locations and settings where your child lives and plays (family, community, early childhood settings) and who is involved. These caregivers might include you, grandparents, childcare workers, siblings, aunts/uncles, etc.
You will be asked to help the team identify where you would like your child to participate. Research and the Individuals with Disabilities Education Act (IDEA) indicate that supports should be provided in natural environments. That means in the same locations or settings that children without disabilities participate, including home, the park, childcare, the store, and other community places.
Your Babies Can't Wait team is not trying to intrude into your private life but is trying to get information needed to help the team provide whatever supports and resources you need to help your child.

How to Participate in an Online Discussion Group (cont.)

(Continued from page 2)
sions are "public" and meant for constructive exchanges. Treat the others in the group as you would want them to treat you.
5. Spell check and reread your messages before posting. Double-check the accuracy of information that you post. Remember that it's almost impossible

to capture tone and attitude in an e-mail message the way you can in a phone conversation. The reader could interpret an innocent comment sent in jest as rude. Make sure that your messages are clear and avoid using sarcasm.
6. Do not blatantly promote yourself or otherwise spam the list. Self-promotion should be

kept to a brief signature file at the end of your posts.
7. Do not forward copyrighted material to the list unless you have permission to do so. If you use information that is not your own, give proper credit.
8. Keep your questions and comments relevant to the focus of the discussion group.

FAMILY FOCUS

VOLUME 1, ISSUE 1

PAGE 5

Conceptual Framework

New

Traditional

Promotion Models

Treatment Models

Focus on promoting compe- Focus on remediation of a

tence and positive function- disorder, problem, or dis-

Research indicates that some ways staff with expertise in child develop- ing

ease, or its consequence

of providing supports and resources ment and family supports. The

to children and families are more effective than others. In order to

conceptual framework provides the Capacity-Building Models

Expertise Models

foundational structure needed to

Provide opportunities for Depend on professional

consistently provide Babies Can't

support the teaming between par- people to use existing abili- expertise to solve problems

Wait families supports and re-

ents and providers (coaches) that is ties and develop new skills for people

sources in the best possible man-

needed to help children succeed.

ner , Georgia has adopted six major ideas or concepts . These con-

Strength-Based Models Deficit-Based Models Acknowledge the assets of Focus on correcting a per-

cepts are supported by the re-

people and help them use son's weaknesses or prob-

search on effective early interven-

these assets to improve

lems

tion. They also represent the in-

functioning

tent of the federal law known as Individuals with Disabilities Educa-

Resource-Based Models Service-Based Models

tion Act (IDEA).

Describe practices in terms Describe practices primarily

of a wide variety of formal in terms of professional

These evidence-based ideas form

and informal supports within services

the backbone or conceptual

a community

framework that guides early inter-

vention in Georgia.

Family-Centered Models Professionally-Centered

View professionals as agents

Models

Families have long been recognized

of families and responsive to View professionals as ex-

by Georgia as a very important part

family desires and priorities perts who determine the

of the early intervention process.

needs of a person from their

You are the EXPERT on your child,

own as opposed to the

and Babies Can't Wait provides

Adapted from Conceptual Framework for Evidence-Based Practices in

other person's perspectives

Early Intervention Dunst (2000)

Alphabet Soup

Babies Can't Wait (BCW): The early intervention program for Georgia's children birth up to age three who have developmental disabilities or delays.
Eligibility: meeting the criteria or requirements that have been set by the state and federal government to qualify for the Babies Can't Wait (BCW)
program.

Intake: the process that fami-
lies go through from the time they are referred to Babies Can't Wait (BCW) until eligibility is determined. It will include conversations with your service coordinator and possibly other team members. It will involve identification of family priorities, questions, interests, and resources. Activities include: gathering current assessment and other information related to the

child's needs and developmental status, providing information and support to the family, and possibly conducting the screening and accessing additional community
resources as Words To Know
needed.

Provider's View cont. have found that I focus on during

(Continued from page 3)

my intake visits with families under

support systems since they are much more long lasting and meaningful to the family.

the Primary Coach Model of Service Delivery. Each family is different and unique so the conversation and focus varies with each home visit. I

I have tried to reflect on what I

have found this model to make my

job much easier and more efficient. I feel that my role has changed in that I am responsible not just to myself, the families I provide service coordination to and Babies Can't Wait, but to my team members as well because I represent them during each visit.

"We focus on their informal support systems since they are much more long lasting and meaningful to the family."

FAMILY FOCUS

Local Program Contact Information
Address:
Phone: Fax: E-mail:

Mailing Address Line 1 Mailing Address Line 2 Mailing Address Line 3 Mailing Address Line 4 Mailing Address Line 5
Visit Babies Can't Wait on the Web: http://health.state.ga.us/programs/bcw
For other Georgia public health programs visit
http://health.state.ga.us/programs/

Featured Family Resources

Families enrolled in Georgia's Babies Can't Wait program frequently indicate a need to locate additional resources for their children and family members. Each issue of the Family Focus will feature a few of the numerous resources currently available to support families on their early intervention journey. If you would like to share additional resources, please forward your recommendations to listen@valdosta.edu.
Babies Can't Wait: Georgia's statewide interagency service delivery system for infants and toddlers with developmental delays or disabilities and their families. Phone 1-888-651-8224 or visit their website. http:// health.state.ga.us/programs/bcw

Babies Can't Wait Parent Educators: Parent Educators are all parents of children with disabilities who have received early intervention and who are familiar with the Babies Can't Wait program and policies. As a component of Project SCEIs (Skilled Credentialed Early Interventionists), Parent Educators provide significant support to families at the local district level as well as providing an important family voice at the state level. This site includes downloadable copies of the Handbook for Success in Babies Can't Wait (English and Spanish Version) as well as an extensive web Directory of Internet Resources

Concerning Disabilities. http://
education.gsu.edu/sceis/
Power of the Ordinary: The everyday, ordinary activities of children and families provide incredible learning opportunities throughout the day. This site includes many ideas to assist families in making each moment filled with fun and functional learning. It includes links to the Everyday Times, a series of free and colorful photographic discovery pages which illustrate the everyday learning opportunities of children. The site is sponsored by the
applied research center of the Orelena Hawks Puckett Institute. http://
poweroftheordinary.org

FAMILY FOCUS

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DPH06/016HW March 10, 2006