The human side of Medicaid / the Medicaid Task Force convened by the Governor's Council on Developmental Disabilitie

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The Medicaid Task Force Convened by the Governor's Council on Developmental Disabilities
September 16, 1996

August 26, 1996

Dear Citizens of Georgia:

The Governor's Council on Developmental Disabilities Medicaid Task Force was established to examine Georgia's public policies concerning health care and community supports for individuals with disabilities, older adults, and low income families. The Task Force monitored and analyzed national and state proposals to reform the Medicaid program. The Task Force convened with over 50 individuals representing consumers, family members, grass roots advocacy organizations, service providers, and public sector agencies.

The Human Side of Medicaid presents the Medicaid program through its beneficiaries. These are the stories of real people who rely on the Medicaid program to purchase health care and long term supports. When citizens of Georgia and the Senior policy makers who represent them propose to change the Medicaid program, they must consider the implications of those changes on individuals such as Ken Shepley and his wife Isabelle who lives in a nursing home because she has Alzheimer's Disease (Ken cannot care for her in their home), OR Trevor and Shareef Sanford who both have severe asthma and allergies and receive their medication through Medicaid, OR Bob Habas who was paralyzed after a diving accident and could only become eligible for Medicaid when he moved into a nursing home. These are just three stories of real people who, without Medicaid benefits,. would be unable to obtain the necessary health care and supports.

The Medicaid Task Force chose this document's focus because individuals are often forgotten when senior policy makers discuss reforms. These ten families were highlighted to provide a glimpse of the real life issues behind Medicaid funding. Each of the ten stories presented focused on four principles of support that are essential for efficient and effective Medicaid services: (1) access to services, (2) control and choice of services, (3) services that respond to individualized needs, and (4) effective evaluation. These are the building blocks for intelligent Medicaid reforms and any responsible changes in the Medicaid program should address these key issues. Medicaid reform should focus on creating greater efficiencies, without reducing the number of people served or the benefits offered.

We hope that those who read this document will gain a better understanding of the human impact of

Medicaid cuts and how those cuts will hurt people. For many, Medicaid is the only health care

coverage available. The time has come for a Medicaid system that addresses the needs of all Georgians.

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Thomas W Query

G6rdon Drennen

Co-Chair, Medicaid Task Force

Co-Chair, Medicaid Task Force

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Gina Alday Wooten Chair, Governor's Council on Developmental Disabilities

John E. Crews, DPA Executive Director, Governor's Council on Developmental Disabilities

HEALTH CARE COVERAGE

"Medicaid helps us to stay above water and keep
our credit good. We would be back to square one without it." - Tim Sanford
When Tim Sanford moved his family to Norcross in 1988, he had a job with the State and good health care coverage for his family. In 1995, his position was eliminated and Tim was left without a job or health insurance for his wife or two sons, Shareef, age 14, and Trevor, age 5. The situation took an enormous toll on the family. Without health insurance, Tim did not know how they could survive the boys' annual battle with asthma and allergies. He was all too aware of the devastating effects of skyrocketing medical biJJs. He had been hospitalized for an extended illness several years ago and only recently had overcome the debt that resulted. After moving to Georgia to build a better life for his family, Tim was suddenly faced with watching all his earnings disappear into medical expenses.
It is hard to imagine either of these two young men facing the dire emergency of an uncontrollable astl1ffia attack. Shareef is patient and thoughtful as he instructs his younger brother in oral phonics exercises. When Trevor becomes frustrated with the learning tapes, Shareef reassures him and coaxes Trevor into reciting along with the tape. Both are quick to follow their father's directions and are proud of their school accomplisl1ffients.
Tmvor & ShareefSanford
The Sanfords' concerns were resolved when Trevor's school informed them that the boys were eligible for Medicaid and health coverage through the Family COlmections Program. The Family Connections counselors were well informed and experienced, directing the family through the proper channels and

recognizing the urgency of protecting the boys during the impending allergy season. Medicaid pays for the boys to receive routine doctors visits, prescription drugs, and emergency room visits for asthma treatments. Medicaid provided the Sanfords with a choice of doctors that enabled Trevor to keep the pediatrician who had cared for him since birth. Additionally, Medicaid responds to the boys' particular needs because it is flexible enough to accommodate occasional emergency visits for astl1ffia tl1erapy.
Medicaid coverage sustained the Sanford family during a very trying time. Because of Medicaid, Tim knows his sons will receive the necessary medical care without exhausting the family's finances to pay for unexpected medical bills. The Sanfords were able to keep their home in Norcross while Tim continued to search for employment. Beginning this fall, Tim has been hired to work as a coach at Shareefs high school. He credits Medicaid with providing him the opportunity to concentrate on finding work and paying taxes into the system that now protects his sons.
"1'", j' there's an emergenc)1, J don't have to worry (f J
don't have the money to take them (to the doctor) or get medicines." - Tracy Longenfeld
Tracy Longenfeld is a single mother of tlu'ee dilldren: Chad, 16; Crystal, 13; and Polo, 3. Tracy and her family live in Athens where she works as an attendant for a young man witl1 severe developmental c1isabilities. Tracy received her health care training through the Georgia Peach Program. The Peach Program encourages mothers to work by training them in a wide variety of fields, and helping to place them in jobs once they are trained. Tracy is now gaining experience in a growing field without fear of losing Medicaid benefits.
Tracy was born on a reservation and raised in a Native American tradition and she is fluent in Spanish. Tracy acts as a "guardian angel" by volunteering as translator for the Hispanic community in Athens. At doctors offices and in courtrooms, she is always ready to help those who need her.
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Tracy and her children began receiving Medicaid when she gave birth to Polo in 1992. Chad and Crystal have been relatively healthy children, but Polo has chronic ear, nose and throat problems. He has been hospitalized more than eleven times and is still plagued by ear infections. Medicaid covers Polo's doctors visits, prescription medications, emergency room visits and surgeries. Currently, Tracy is waiting for doctors to decide whether it will be necessary to do surgery on a swollen lymph node in Polo's neck. Tracy has found Medicaid services to be easily accessible from her home. Furthermore, Polo's doctor and hospital have worked to coordinate their efforts and ensure Polo receives the best possible care.
Medicaid coverage means that Tracy doesn't have to worry that she will not have enough money in case of emergencies. She has been able to focus her attention on improving her future and gaining valuable skills so that she can work to support her family.

Tracy, Crystal & Polo Longenfeld

LONG TERM SUPPORTS
((G ee, I've been married to this gal for fifty years. What am I going to do if this (Isabelle loses Medicaid benefits) happens?" - Ken Shepley

Ken and Isabelle Shepley lived in Delaware when she was diagnosed with Alzheimer's Disease in 1986. For four years, Ken cared for Isabelle in their home. As time passed and Isabelle's condition deteriorated, it became increasingly clear that Ken would require some help. In 1990, Ken's son and daughter-in law came for a visit and realized he was in desperate need of support. They offered to take Isabelle back to Atlanta with them for an extended vacation. Ken was grateful for the rest and agreed to let Isabelle travel to Georgia. After three days, Ken's son called to say that they could not adequately care for Isabelle, and Ken would have to take her home. When the day care center Isabelle attended no longer was able to help her, and Ken's health began to fail, he decided that it was time to move closer to his family in Georgia.
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Ken & Isabelle Shepley

In 1992, when the couple moved to Milledgeville, Ken began an extensive search to find a nursing home to care for his wife. When Isabelle entered the nursing home, she became eligible for Medicaid benefits. The local Department of Family and Children Service's caseworker was knowledgeable and helpful in guiding Ken through the Medicaid application process.
Medicaid allows Ken a great deal of choice and control in the services provided to Isabelle. After surveying eight nursing homes, Ken chose the one best suited to Isabelle's needs, and has been very pleased with the care she receives. Additionally, Medicaid allows Ken to choose Isabelle's doctors and to seek a second opinion when he feels it is necessary. Isabelle's original doctor fi'om Johns Hopkins University has moved to Emory University and frequently consults on Isabelle's care.
Without Medicaid support, Isabelle would not receive the supports she requires, and Ken would be lU1able to provide for her care.

with the support of family and friends, Bob developed a plan to live in a specially adapted accessible apartment building. The move from the nursing home has brought Bob opportunities for employment, and he currently works full time. In fact, Bob went back to work as a tutor after he graduated from Savannall State College. He describes this position with amusement because the Quantitative Analysis professor for whom he later became a tutor had earlier required Bob to take his course twice before passing him!

U/t's a matter of life and death to get to choose my
own doctors." - Bob Habas
Bob Habas lives in Savannah and was paralyzed as the result of a diving accident seventeen years ago. Immediately following his hospital stay, Bob moved home and was cared for by his parents. After four years, Bob's mother became ill and died. In order to ensure that he would always get the assistance he needed, Bob and his father decided that a nursing home was his best option. Bob became eligible for Medicaid coverage when he entered the nursing home.
During the eight years he spent in the nursing home, Bob experienced the very worst of institutional liVing. The conditions at the nursing home were deplorable. Many patients were left without assistance throughout the public hallways, while others would scream from their beds with no response from the attendants. But he was often left without being moved for extended periods of tinle, and soon found himself very ill with no means of caring for hinlself.
In an attempt to find an alternative to nursing home living, Bob worked to finish his college degree. The very structured nursing home environment made attending school and studying very difficult. Finally,

Bob Habas
Georgia's Personal Attendant Care Bill, House Bill 1217, passed in 1988, provided the guidelines necessary to support independent living. Once funding was finally ensured, the state legislation made it possible for people with disabilities to live in the community and choose their own personal assistants. With a Medicaid Independent Care Waiver, Bob has been able to pursue his goal of an independent, productive lifestyle. The Waiver recognizes that Medicaid reCipients have very individualized needs. This means Bob is able to access services while living in the conununity. The Waiver provides the fmancial support needed so that Bob can hire his own personal assistants, visit the doctors of his choosing, and receive his medication.
When he was in the nursing home, attendants would decide if Bob was sick enough to visit the doctor. Now Bob has control over his choice of doctors and the frequency of his visits. Bob has worked to save the money needed to purchase a van and Vocational Rehabilitation Services provided him with the funds to equip his van, thus giving him freedom of choice and mobility.
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"""}l'fnotfor Medicaid, I wouldn't be at Central State
Hospital, I'd be under it" - Doris Hester
Doris Hester is a continuing success story. She has achieved what seemed impossible five years ago: a job, and her own apartment. Doris suffered major depression after she was faced with a totally new life when she and her husband divorced after thirty-two years of marriage. She moved to Macon, but was lUlable to find a job and was overwhelmed by her circumstances. After spending four months at Central State Hospital, Doris was discharged, and having no family or friends in the area, she felt absolutely alone. With nowhere to go and no one to turn to, Doris began to rebuild her life.

Now Doris returns to Central State Hospital to present workshops that share her story of success with the current mental health patients. She combines her own cartoons, anecdotes and endearing sense of humor to describe her journey towards mental wellbeing. One of the most notable stories she shares recounts a time when she was institutionalized and overheard other patients discussing the questions asked by the Discharge Review Board. As she listened she realized that, if asked, she did not know the name of the Governor of Georgia, or the county to which she had so recently moved. The board asked these questions in part to determine whether a patient was ready to return to the community, and Doris was unable to demonstrate her readiness. The prospect of permanent residence at Central State terrified her, and Doris struggled to create a formula for her own mental well-being. Now Doris shares her belief that we must nurture our mental health in much the same way as we nurture our physical health, and uses her experiences to guide others to total wellness.

Doris Hester
Doris was placed with an outpatient case manager who acted as her guide, and who assisted Doris as she made the transition back into the community. Doris first learned of her Medicaid eligibility when she applied for Social Security benefits. Doris's mental health needs include daily medication combined with therapy. Medicaid provides the supports that allow Doris to purchase the medications and therapies she requires so that she can be active in her community. She lives in a HUD apartment, and has a job which meets the income guidelines required for Doris to keep her Medicaid benefits. Medicaid covers all of her doctors visits, prescription medication, and surgical procedures.
Doris's outpatient care manager was well informed. She guided Doris through the Medicaid application process. Under Medicaid guidelines, Doris is able to choose her own doctors and can maintain a consistent course of treatment. This control and choice in her services is essential to Doris' continuing mental health growth. Doris is best served by a combination of medication and therapy, and her current Medicaid services are coordinated to respond to her particular needs.
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((1W17Z'e became aware of the fact that the county
used to lapse money back to the state, rather than improve and expand services for peDple with mental retardation." - Ginny Riley
Ginny Riley

Ginny Riley has a lifetime of experience with Medicaid and the Mental Retardation Waiver Program. Her son Bruce has Down Syndrome and has been a part of the Medicaid Mental Retardation Waiver Progldm since 1990. Ginny was determined to find a way to meet Bruce's needs without placing him an institution. In order to accomplish this, Ginny challenged the existing system to provide for individuals without simply assuming their needs would be met in institutional care. She believed strongly that Bruce and others would be better served by a group facility that allowed them to experience life in their own community. Ginny refused to give up her hope for a better quality of life for her son and other Georgians with mental retardation. She struggled for several years to create this reality, and remembers pressing appointed officials to stop stalling, and move forward with the approval and implementation of the Waiver. Her success came when, after years of advocacy, the Mental Retardation Waiver was finally approved. Now she works so all can benefit from residences that were established to provide for Bmce and other individuals with similar needs.
Bmce has severe mental disabilities and requires twenty four hour care. He has private insurance coverage, but it does not cover one hundred percent of doctor's fees or prescription drugs. Additionally, Bmce's private insurance covers none of the costs of living in a group home. Medicaid services include the remainder of payments for doctors visits and prescriptions as well as the majority of the expense for Bmce's residence in his group home. Without the Mental Retardation Waiver, Bruce could have to be placed in a nursing home after his parents could no longer provide for his needs.
Medicaid's Mental Retardation Waiver Program works to assure Bruce access by providing full time assistance in a community setting. Moreover, his group home is located only four miles from Bmce's parents' residence. Medicaid also gives Bmce's family a measure of choice in his care so that they can decide what services are best for him. Finally, the Community waiver has been flexible in its response to Bmce's need for several different kinds of doctors and specialized treatment.

((1':'Jrf
11 he Division of Rehabilitative Services' goal is to
vocationally rehabilitate me so that I can work outside the home; but the Medicaid funded home health care program works in conflict with this goal." - Tana Keel
On December 26, 1983, Tana Keel sustained a spinal cord injury that left her paralyzed from the shoulders down and barely clinging to life. After six weeks in the Intensive Care Unit and six months in the hospital, she was sent home with no idea how to care for herself or her two sons, then aged 9 years and 11 months. A year after she was released from the hospital, Tana moved to Riverdale.
Tana took charge of her own future and began to make the connections necessary to establish her Medicaid eligibility. She started college in 1987, determined to build a life that would accommodate her disability. Tana worked to get her Associate's degree and then found a job with a federal agency. But even with her degree and new employment, Tana had to face an uphill battle. She was willing and able to work and pay taxes, but unable to fmd adequate personal assistance needed to help her get up and to work on time. The home health care service paid for by Medicaid to help her get out of bed in the morning and prepare for work was unavailable during the early morning hours. If Tana was unable to get to work by 8:00 a.m. she would have lost her job.

Tana Keel
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Tana does not have a Medicaid Independent Care Waiver, and is funded only for two hours of personal assistance each morning, five days a week. Without family to assist her, Tana is solely responsible for her own care. Medicaid does provide her with the freedom to chose her own doctors and services, but many of the rules and regulations of the system do not meet her permanent, extensive needs.
Several years ago Tana faced a medical emergency when her catheter detached in the middle of the night. All alone, Tana called emergency services and was brought by ambulance to the nearest hospital. The emergency room personnel replaced her catheter, but could not allow the ambulance to transport her

home because Medicaid stops funding when the emergency is considered over. Tana cannot drive and had to spend the night in the hospital emergency room before the nurses could find someone to bring her equipped van from her apartment and transport her home.
Even though Medicaid provides Tana with some much needed services, her coverage is not well tailored to meet her needs. She recently completed the requirements for a Bachelor's degree in Business Administration, but is not certain she will receive the personal assistance and transportation she needs to keep a job.

CHILDREN WITH ONGOING HEALTH CARE NEEDS

""The Katie Beckett Deeming Waiver is Emily's
gateway to healthcare" - lenni Clark
Darryl and lenni Clark had no experience with Medicaid or the Medicaid Deeming Waiver (often referred to as the Katie Beckett Waiver) until more tllan six months after the birth of their second child, Emily, three and a half years ago. Almost two years ago, the Clarks moved to Lawrenceville with their two daughters Halee, 7, and Emily, 3 1/2. Darryl works full time and the family has private insurance coverage through his employer. Nevertheless, after Emily was diagnosed with infantile epilepsy so severe that she spent the first six months of her life in Egleston Hospital, they knew that private insurance could never be enough to cover all of Emily's expenses. When the Clarks reach the maximum level of their private insurance covef'tlge, Emily will have only Medicaid to pay for health care expenses.
lenni remembers well Emily's first year, spent mostly in Egleston Hospital. Every night Halee called to say goodnight to the baby sister she hardly knew. And each time Halee sang "You Are My Sunshine" to let Emily know she had a big sister who loved her very much. Now that Emily is home, Halee loves to hold Emily and read books to her.
Doctors have been unable to control Emily's seizures, and they continue to adjust her medications
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Halee & Emily Clark

in an attempt to best manage them. Because of the seizures, Emily developed gastrointestinal disease and began to aspirate. As a result, doctors inserted a feeding tube into her stomach to ensure Emily could retain the up to thirty doses of medicine she receives each day. Currently, Emily is seen by a pediatric neurologist, gastroenterologist, pulmonologist, and a registered home health care professional. The Deeming Waiver covers the co-payments and deductibles not covered by the Clark's private insurance. Additionally, it covers physical therapy, occupational therapy, and speech therapy services. The Waiver also pays for family counseling services.
Jenni and Darryl learned of the Deeming Waiver only after they questioned Emily's doctors about how they could possibly pay for her initial six months of hospitalization. It is essential that people in gatekeeping and case management roles are well-informed and experienced to provide parents with the information necessary to make decisions. Emily's fanlily has had control and choice concerning the services she received. Her pediatrician is close by in Lawrenceville and her gastroenterologist has cared for Emily for more than three years. Jemli speaks from her extensive experience when she states that "parents are the best case coordinators for their children with disabilities".
lJ
uw: hen the doctors closed the enlarged hole in Anthony's heart, he just crashed (heart stopped beating)." - Kelly Harper
Anthony Harper, Jr. has spent more time hospitalized in the eight and a half months since he was born than most people spend their entire lives. Anthony has hypoplastic left heart syndrome and altllough the muscles in his heart are perfectly formed, the left side does not function at all. Thanks to amazing new technology and dedicated physicians at Egleston Children's Hospital, Anthony has a chance at life. Because Anthony's dad owns his own business, it has been inlpossible for tile Harpers to [md private health insurance. Medicaid funds the services that support Anthony and his three year old sister Cierra.

It is hard to imagine the child, romping in his baby walker, has had all of his blood f1ltered and purified to ensure effective surgery. Although doctors visits are a way of life for Anthony, he still panics at the endless probes and neecUes. In contrast, a visit to the Harpers' home is full of rowdy, good natured banter between Anthony and llis sister Cierra.
Cie1'rC1 & Anthony Harper
Because his severe heart problems make digestion very difficult, Anthony also suffers from a debilitating gastrointestinal disorder. The complications arising from Anthony's heart disorder require a battery of doctors. He regularly visits a cardiologist, gastroenterologist, and pediatrician. Furthermore, it is necessary that Anthony's treatment is a coordinated effort. His doctors work together in order to create the best possible treatment plan.
One of the ways that Medicaid works for the Harpers is the availability of speciality services that are geographically accessible to the Harper's Covington home. In addition to accessibility, choice of Medicaid services make it possible for Anthony to receive the most advanced treatments. Kelly and Anthony, Sr., have been able to evaluate the available options and choose what they believe to be the best course of treatment for their son. Medicaid services respond to the Harpers' particular needs. Anthony's surgeries are all extremely technologically advanced, and Medicaid pays for the care he requires.
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~, T~ be the parent of a special needs child is an
opportunity to show God's miracle working powers." - Jennifer Rashwan
Princess Rashwan is a precocious and energetic five year old. She lives in Valdosta and attends Kindergarten at Sallas Mahone Elementary. She loves ballet and tap classes and special dinners at the local Applebee's restaurant. Her enthusiasm is tempered only by occasional bouts of shyness, and her sollie can light up a room. Princess's mom Jennifer possesses the neverending energy required for any working divorcee parent. Even though she works full time and has a law degree, Jennifer was unable to find adequate medical coverage for her daughter, because Princess has cerebral palsy. Thanks to the Medicaid Deeming Waiver, she is now assured of the best possible care.

strated enthuSiasm, memory and retention of the choreographed routines. In response, mother and daughter sought help from the caregivers who provide Princess's therapy services. These health professionals informed Jennifer that physical disabilities associated with Princess's cerebral palsey would make standard testing results invalid. They have worked together to arrange for Princess to be tested appropriately at a center in Atlanta.
In order to be Medicaid eligible, Jennifer would have to quit her job to care for Princess. Without private insurance, the costs of ongoing medical care would have long ago exhausted their income. The Deeming Waiver gives Jennifer the freedom to work without the concern that her income level would prohibit Princess from receiving Medicaid benefits. Furthermore, Medicaid provides speech, occupational and physical therapy benefits often denied through private coverage. These benefits are essential to Princess's development and quality of life.
The Medicaid program is accessible to Princess and Jennifer in part because of the proximity of the Valdosta State University child care program. Additionally, Jennifer has the right to decide what services, such as different therapy, best respond to Princess's particular needs. Jennifer credits Medicaid with providing the peace of mind that makes he~ day to day life so much easier. She knows Princess is receiving the best and most effective care so that she can continue to develop into a bright and cheerful child.

Jennifer & Princess Rasbwan
Recently, Jennifer has had yet another challenge to advocate on behalf of her daughter, attempts to categorize Princess as intellectually disabled. Any inaccurate categorization would determine her placement in schools and possibly create a perception perhaps diminishing her true capabilities and potential. Princess has a natural gift for the performing arts and performed exceptionally well in a recent ballet and tap recital. Both Jennifer and Princess's dance instructor at Dance Art, Inc., agree that her performance demon-
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MEDICAID IN GEORGIA

Medicaid legislation was enacted in 1965 as Title XIX of the Social Security Act (pi. 89-97) as an attempt to create a state and federal partnership for national health care for persons of low income. While Medicaid is often seen as a program for medical assistance, it has a much broader purpose to provide those services necessary to help families and individuals live independently. Georgia contributes 33 cents of each Medicaid dollar; the federal government, about 66 cents. The federal funding stream has traditionally been an entitlement to federal funds, limited only by Georgia's program decisions and fiscal limitations.

Medicaid Beneficiaries &Expenditures

100.00%

Beneficiaries

Expenditures

80.00%

60.00%

40.00%

20.00%

0.00%

that do not provide health insurance. In addition, nearly 200,000 children and adults with disabilities have access to specialized health care and long term care supports through the Medicaid program.
The Medicaid program is responsible for extending improved medical services to many impoverished children and pregnant women, elderly, and people with disabilities. Those eligible for Medicaid include recipients of Aid to Families with Dependent Children (AFDC), Supplemental Security Income (SSI), pregnant women and children up to age 6 at 133% of the federal poverty level (federal poverty level is $7,470 for an individual, $10,030 for a single mother with one child, and $12,590 for a family of three), and children born after September 30, 1983 with family incomes up to 100% of the federal poverty level. Most states use the federal SSI definition for determining Medicaid eligibility. Today, Medicaid is comprised of essentially three programs:
A health insurance program for low income individuals. Medicaid provides primary and acute health care services for low income families (mostly women and children), low income adults over age 65 and SSI beneficia ries.

In 1995, 1,135,212 Georgians received assistance through the Medicaid program. Families and individuals received health and long term care supports they could not otherwise afford. The Medicaid program provided health care to more than one in seven Georgians or 15.7 percent of the population. For almost 98,000 elderly Georgians, Medicaid helps with community supports provided through the Community Care Support Program and nursing home care, which would otherwise be unaffordable. Medicaid is the only source of health insurance for the nearly 600,000 children statewide whose parents are either unemployeed or have jobs

A long term care program for older adults and people with disabilities. Individuals and family members are able to purchase many long term care supports with Medicaid assistance. Medicaid pays for 85% of the institutional costs for poor people living in nursing homes and Intermediate Care Facilities for People with Mental Retardation (lCF/MR). Medicaid also pays for the Medicare premiums for low income adults over the age of 65.
A specialized service program for people with developmental disabilities, mental illness, substance abuse, HIV, or physical disabilities. Medicaid provides a variety of home and community based services for people with disabilities or chronic illness.

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MEDICAID REFORM IN GEORGIA

In Georgia, Medicaid benefit expenditures have increased 116% in five years and the number of beneficiaries by 106%. Currently, Georgia spends $3 billion for the over one million people currently eligible for Medicaid. In 1993, Medicaid financed 14% of all health spending in Georgia (Department of Medical Assistance, 1995). Medicaid expenditures have increased from 9.6% to 12.2% of Georgia's state budget over the past five years. According to projections by the Georgia State Economics Forecasting Center, Medicaid is expected to grow $400 million each year for the next six years. At this rate, Georgia will spend $4.8 billion in 2002. If the federal government passes legislation to reduce or freeze the amount of money it gives the states, Georgia could experience a shortfall of $1 billion in federal funding by 2002 (Associated Press, April 19,1996).
Governor Zell Miller instructed the Department of Medical Assistance to consider ways to slow Medicaid growth in Georgia. The Georgia Coalition for Health, a non-profit organization comprised of representatives from health care providers, the business community as health care purchasers, public sector health care entities, and Georgia Health Decisions, accepted the Governor's request to develop specific recommendations for Medicaid program reform. The Coalition's mandate is to recommend a program that allows policymakers to predict annual costs while ensuring access to services. Among the issues discussed by the Coalition were (1) who should be eligible to receive Medicaid assistance; (2) what services should beneficiaries be able to access; (3) how should Medicaid pay for services; and, (4) what is the responsibility of individuals, families, service prOViders, and government in the Medicaid system.
Among the methods proposed to achieve budget predictability and save money is creation of a system of managed care. The past few years have seen states, including Georgia, responding to increased growth in the Medicaid program and reduction of federal support by shifting recipients into managed health care plans. Managed care is a "system of health care delivery where the provi-

sion of an agreed upon set of health care services is coordinated by an entity or person (a health plan or primary care case managed) that is obligated by contract or agreement to be responsible for the care provided (or not provided) to an individual" (Horvath & Kaye, 1995, p. 3). The goal of a managed care system is to prOVide access to quality care while containing costs by ensuring that all necessary services are provided to an individual.
The reduction in spending both on the federal and state level, threatens individuals and families who rely on Medicaid to pay for health care and long term supports. Throughout the process of creating this document, two themes were echoed by all of the Medicaid beneficiaries. First, if Georgia's Medicaid program is to succeed, policy makers must address the need for community based supports. The second theme was the bias against working families. Many of these families and individuals face the dilemma of how to purchase health care and long term supports in the community in a system that supports institutions as a prinlary deliverer of care. Others must face disincentives in the system that do not allow beneficiaries to work and retain any health care coverage provided by Medicaid.

Medicaid Expenditures
Type of Services for FY 1995

5785,578,506 Inpatient Hospital

5730,550,814 Nursing FacilitiesllFCMR

Home and Community Based Care _ - 5120,012,364 - - - 560,428,678
Family Planning/EPSDT 5281,038,288
Prescribed Drugs
5264,192,678 Other

In interviews conducted for this publication and at Community Dialogues sponsored by the Georgia Coalition for Health, Medicaid beneficiaries and their families overwhelmingly supported increased options and availability of home and community based services. From prOViding people the supports necessary to keep their loved

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ones at home rather then in nursing homes, to ensuring better funding for respite and personal assistance services, Georgians are working to shift the presumption away from nursing home and instinltional care. Among the benefits of community-based services that can be achieved are (1) care that respond to the needs of the individual needs; (2) choice and control in services and providers; and, (3) a quality of life in the community of an individual's choice. Family members often face an impossible dilemma as they become physically, emotionally, and financially unable to care for their loved ones at home. Many seek alternatives to nursing home and institutional care and fmd Medicaid guidelines too restrictive. Reforms must create the supports necessary to keep people out of institutions when they are best served in the community.

Many Medicaid beneficiaries face the dilemma of being unable to work to fmd a way out of their poverty without losing Medicaid benefits. This bias against working individuals who receive Medicaid affects health care coverage. Individuals and families with children must have access to preventive vaccinations and check-ups in addition to doctors for bouts with colds or flu. At other times, individuals and families may incur large expenses for unanticipated medical emergencies or long term support requirements. Currently, many Georgians face the impossible decision of whether to work, or to assure their health care coverage through Medicaid. The Medicaid program should not penalize individuals and families with loss of benefits because they have a job and are paying taxes.

CONCLUSION

Medicaid reforms must endeavor to address these issues and others that affect recipients and are central to the Medicaid system. As lawmakers consider how to achieve budget predictability and unprecedented cuts in the Medicaid program, many questions remain about the future character of the program and how it will meet the needs of the Georgians its serves. Will Georgians still have the Medicaid safety net when they need it? Will Medicaid dollars still be spent on vital health and long term care services? Will Georgia increase or decrease its contributions to qualify for federal Medicaid funds?
By focusing on real families who have benefited from the key features of the Medicaid program, this report highlights the issues policymakers must keep in mind as they consider redesigning the program. Will children in low wage working families without health insurance benefits continue to be eligible for Medicaid coverage? Will Georgia continue its improvement in prenatal care for mothers or will it once again become the period as the state with the highest rate of infant mortality? Will children with disabilities be able to obtain the health care and long term supports they need? Will vulnerable benefi-

ciaries in managed care plans have the consumer protections necessary to ensure quality care? What will happen to the health of low income persons if they are forced to pay more than they can afford for their care? Will low income older adults continue to receive Medical assistance with unaffordable Medicare premiums, deductibles and copayments? How can we encourage people to work if getting a job means losing health coverage? How will Georgians afford long term supports (Families USA, 1995)?
Medicaid was created to provide a saftey net for individuals who could not afford health care or required assistance to live independently. Current discussions about reforming this program threaten this saftey net. Georgians should remember the stories of those presented in this document and millions of others as discussions occur about changing the program. Medicaid is a program that helps the most vulnerable people in our society: children, people with disabilities, older adults, and low income adults. The question that must be asked first in any discussion is "how will this change impact the individuals and families who use Medicaid and its benefits?"

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REFERENCES
Families USA Foundation (1995). Hurting real people: The human impact of Medicaid cuts. Washington, D.C.: Families USA, 4-5.
Georgia Department of Medical Assistance (1996). Annual Report 1995. Atlanta, GA: Author.
Associated Press (April 19, 1996). Georgia Medicaid Could Fall $1 billion Short. Available on line at Prodigy Services Company.
Horvath,]., & Kaye, N. (May 1995). Medicaid managed care: A guide for states, 2nd edition. Portland, ME: The National Academy for State Health Policy.
The Twentieth Century Fund (1995). Medicaid reform: A Twentieth Century Fund guide to the issues. New York, NY: Twentieth Century Fund Press. Available at http://epn.org/tcf/tcmdcd.html
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This report was produced with the assistance of the following Council staff:
John E. Crews, DPA Executive Director Eric E. Jacobson, Planner Iris McIlvaine, Publicist
Alethea Alford, Program Assistant
Christine B. Ledvinka, JD Consultant
This report was based on a similar report by Families USA Foundation (Hurting Real People: The human impact of Medicaid cuts), which described Medicaid issues on a national level. We
appreciate the leadership demonstrated by the organization and insight into the impact of Medicaid on the lives of people.