FLORIDA DEVELOPMENTAL DISABILITIES COUNCIL, INC.
Background
acknowledgements
PART ONE
Analysis of Services
Introduction
I. Services Available to Children
The Department of Health......
The Department of Children and Families......
The Department of Education......
Services to Children in Other Settings......
and another 12% or 1269 showed significant deficits, which suggested a developmental disability. In 2001-02, 78 children with low intellectual functioning were placed in specialized residential programs, as a result of multidisciplinary placement staffing. Services available to these youth include case management services, behavior modification, counseling, mental health services, social skills enhancement, pre-vocational and vocational services, health services and family intervention. Contracted professionals provide these services in the residential treatment commitment programs.
Summary of Services Available to Children......
Potential Obstacles to Services for Children......
II. Services for Children Transitioning from School
Transition Resources......
Health Care......
adults with special health care needs. Yet, medical professionals recognize that access to quality health care for children in this population is critical for a successful transition from dependence to independence. Families of CSHCNs also report serious difficulties in finding dentists to care for their children. This issue becomes more prominent during the transition years.
Dental Services......
Educational Services......
Division of Vocation Rehabilitation (DVR)......
Assistive Technology......
Developmental Disabilities Program (DDP)......
Summary of Transition Services......
Potential Obstacles to Services......
III. Services for Adults
A. Health Care Services......
The Department of Health (DOH)......
The Developmental Disabilities Program (DDP)......
Developmental Services Home and Community Based Services Waiver......
Funding and Individuals Served in 2001-02......
Services Provided......
Services Provided......
Residential Services......
Services Provided/Residential Trends......
C. Employment and Day Activity Services......
Services Provided/Employment Trends......
DVR Services......
Services Provided......
D. Transportation Services......
Waiver Transportation Services Provided......
Community and Family Supports......
Potential Obstacles to Services for Adults......
IV. Services for Older Adults
Older Adults with Developmental Disabilities......
A. Health Care Services......
B. Residential Services......
C. Day Activities......
DOEA Services Provided......
D. Transportation Services......
Services Provided......
Potential Obstacles to Services......
PART TWO
Conclusions and Recommendations
I. Introduction
II. General Responses to Focus Groups and Surveys
III. Specific Responses from Focus Groups and Surveys
IV. Conclusions and Recommendations from this Study
V. Emerging National Trends and Their Impact in Florida
References Used in this Report
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Promises Made…Promises Kept
Part One
Analysis of Services
Background
Only in recent years have better funding streams, new legislation and improved public attitudes fostered the enhancement of services for people with severe and long-term disabilities around the country. Like most states, over the last decade Florida has been moving steadily towards the goal of providing individuals with developmental disabilities the services they need within their own homes and communities. Part of this effort entails moving individuals out of large institutions. Four state developmental service institutions (DSI) remain in Florida, though one is being phased down and is scheduled for closure. Residents of private intermediate care facilities (ICF/DD) also have the option of receiving services in home and community-based settings.
With a more aggressive pursuit of Medicaid Waiver funds, the State of Florida has nearly doubled(a 94% increase) the amount of money spent on services for individuals with developmental disabilities over the last several years, from $503M for 1988-89 to a total of $975M in 2002-03. (This compares to an average U.S. increase of about 14% during the same four-year period.) The number of people served in Florida also increased during the same time period from a total of 9219 to more than 26,000 (a 182% increase). The need continues to grow exponentially. Even as the latest budget request was being formulated to include services to those remaining on an initial waiting list of 10,000 people, a second and larger group of 10,000 individuals surfaced and now also awaits services.
Responding to the urgent demands of consumers, families and disability advocates—as well as recognition of the need by administrators and legislators—the Developmental Disabilities Program is currently in the throes of a complete re-design. Guided by a representative group of the aforementioned stakeholders, the aim is that the revamped system will better provide the service flexibility and choices required by individuals and their families.
Within this evolving environment of expanded expectations, the Florida Developmental Disabilities Council, Inc. contracted the Mailman Center -- a University Center of Excellence in Developmental Disabilities (UCEDD)-- at the University of Miami to conduct a policy analysis and review of public services available to Floridians with disabilities.
acknowledgements
In preparing this report, data was gathered from Florida departments and offices that provide social services to all residents. These include:
Department of Children and Families/Developmental Disabilities Program (DDP);
Department of Education;
Department of Health;
Department of Children and Families/Alcohol, Drugs and Mental Health Program;
Department of Education/Vocational Rehabilitation Program;
Office of Disadvantaged Transportation;
Department of Elder Affairs; and,
The Medicaid Office, within the Agency for Health Care Administration.
We would like to thank the employees in these offices who patiently provided assistance in obtaining the data and information requested.
Important input was also provided by consumers, families and service providers who participated in a series of focus groups held around the state, as well as in written surveys that were distributed at disability conferences and meetings. To these individuals who took the time to share their opinions and perspectives, we are also grateful.
Much of the descriptive and statistical information contained in this report was gleaned from direct contact with relevant agency staff or from Florida’s public information web sites, including some of the wide variety of reports and publications listed at the end of this report.
Project Consultants who contributed to this report include:
Rae Alfassa-White, M.S.
Linda Friedman, M.S.W.
Martha Sheldon, M.S.W.
Grateful appreciation is also extended to the organizations whose kind cooperation made the project’s focus groups possible:
District Seven Family Care Council
People First, South Florida Chapter
Florida Association of Support Coordinators, Jacksonville area.
…………………………..
Daniel Armstrong, Ph.D., Director of the Mailman Center
Jean Sherman, Ed.D., R.N., Author
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Introduction
Florida is a state populated by more than 16 million people. The latest update of the 2000 census contains the following information about people with disabilities who do not live in institutions. For ages 6-20 there are 284,514 individuals; there are 1,914,507 individuals between ages 21-64; and, the over 65 age group holds 1,075,545 people. All told, there are more than 3.2 million Floridians with some sort of disability. Within this population there is a group of people whose lifelong or developmental disabilities are sufficiently severe that they require ongoing services and support. The range of needed services will likely vary throughout the individuals’ lifetimes and some supports may be provided by the voluntary sector, primarily by families. However, the vast majority of these individuals’ service needs must be filled by the public sector.
The number of Floridians with developmental disabilities. Several factors confound attempts to estimate the number of Floridians with developmental disabilities who need services from the system. These include: 1) the total state population of people with developmental disabilities can be obtained by using research-based formulas. However, this total is different from the number of people whose severity of disability causes/will cause them to seek services. A study by Larson and colleagues (2001) may be helpful in interpreting these estimates. Using data from this complex study of methods, ages, definitions and population surveys, they determined that an accurate, combined prevalence rate of mental retardation and developmental disabilities in the non-institutionalized U.S. population is 1.49%.
2) The ESE school population cannot be used to project a number, since not all children with developmental disabilities are clearly identified and, of the total number of students with retardation, some portion will “age out” or increase their IQ scores by graduation and thus become ineligible for services.
3) The DDP currently uses the number of known individuals as a
prevalence number, but that does not take into account people who are currently not being served, for whatever reason.
4) Some large states (e.g., Texas) estimate the prevalence of one unknown person with a disability needing service for each one that is known.
5) Reluctance of some individuals with unresolved immigration status
to attempt to access services may also result in underestimates of the number in need of services.
Since they produce approximately the same results, two of these approaches can be useful for planning purposes. First, using a 1.49% prevalence rate (or approximately 1.5%) in the state population of
16 million produces an estimate of about 240,000 Floridians with developmental disabilities. Based on their breadth of experience, the consulting group, Mercer reports that approximately 1 in 3 persons in the actual population comes forward for services. From a population of 240,000 that means a service population of approximately 80,000.
Second, assuming the existence of one person unknown for every person known (41,000) to have a severe developmental disability produces a number of approximately 82,000 persons who need or will need services. This is nearly double the current number of people with severe developmental disabilities who are being served or who have requested services in Florida.
Tracking People with Developmental Disabilities in the Health and Social Service System. Determining the number of people with developmental disabilities who are served by state programs other than the DDP is not entirely possible, given the current reporting systems in place. Some departments (DOH, TD) track general “disabilities” in the individuals they serve; others do not. Some departments (DOE, DOEA) do track their clients by specific disability, but use functional categories rather than a classification. These functional categories are more encompassing than a developmental impairment and so, cannot be used as an equivalent. Still other agencies (DVR) may use the term “developmental disability,” but interpret it more narrowly to mean clients who have cognitive impairments only. Other clients who have the developmental impairments of cerebral palsy and spina bifida are grouped into another category with all other clients who have “orthopedic impairments.”
Limitations of the Findings. Any examination of the service data presented in this report must be viewed within the framework of the reporting disparities just described, and with an understanding of the lack of any interagency accountability for citizens with developmental disabilities.
That said, the service data presented in this report serves as a foundation for identifying: 1) certain service trends, 2) barriers to service use and, 3) specific recommendations for enhanced quality, access and availability. These recommendations derive from reviews of existing service policies and eligibility criteria, as well as from the observations and experiences of those who use the services, either as recipients or as providers.
Contents of the Report. This report is presented in two parts. Part One illustrates the data findings, both quantitative and qualitative. Because people with developmental disabilities typically require services and supports across their life spans, Part One looks at services for four chronological age groups: infants and children, adolescents in transition, adults, and old adults. Within each section, the appropriate services are discussed and data supplied for the services given. Each section also provides typical consumer profiles and names some service barriers. These barriers are further elaborated in Part Two of the report.
Part Two contains the qualitative input of participants in three focus groups and of survey respondents from around the state. Conclusions and recommendations are then presented. The conclusions result from an analysis of the service data collected, and include trends discovered. The recommendations in this report evolved from the study’s conclusions; some are expressed in the words of survey or focus group participants.
I. Services Available to Children
Within the State of Florida, there are several departments and offices concerned with providing services to children with developmental disabilities, from their early childhoods through high school graduations and their transitions from school. The primary entities providing childhood services include the Departments of Health (DOH) and Education (DOE) and, indirectly, the Medicaid Office of AHCA. The respective roles of these entities are detailed below.
Health Care. According to the 2002 report, The Health of Florida’s Children and Youth, providing preventive, primary and specialty services for children with special health care needs is a core public health function for DOH. Children with these special needs also receive educational services from DOH from ages 0-3; school aged children receive educational services from DOE.
According to the 2002 report, The Health of Florida’s Children and Youth, poverty, a lack of insurance or rural location place a family with a child with a disability and chronic condition at greater risk. Children with special health care needs are also at increased risk for child abuse and neglect, when compared to the general population.
The Department of Health
Within the Department of Health, the Division of Children’s Medical Services (CMS) is the most significant service entity for children with developmental disabilities. CMS serves 77 percent of all children in Florida who are enrolled in publicly supported health insurance programs. The CMS program provides children with special health
care needs with a family centered, managed system of care. Children with special health care needs are those children under age 21 whose serious or chronic physical or developmental conditions require extensive preventive and maintenance care, beyond that required by typically healthy children. During 2001-02, CMS served over 155,000 children with special health care needs. Families are usually required to pay a monthly insurance premium of $15, but there is no cost for services.
Most services are provided at or coordinated through CMS offices in 22 local communities throughout the state. When necessary, children
are referred to CMS-affiliated medical centers. These centers provide many specialty programs with follow-up care provided at local CMS offices. In some rural areas of the state, county health departments provide primary care services and conduct the prevention activities. To enhance access to specialty care in rural areas, CMS implemented a specialists’ telemedicine initiative through the University of Florida.
CMS has two main divisions: Prevention and Intervention (EI) and The Network. The scope of Prevention and Intervention includes the Child Protection Team, the Early Intervention and Prevention System and, Regionalized Perinatal Intensive Care.
The Network is a statewide healthcare delivery system for children 0-21 years old with chronic or physical or developmental conditions. The CMS Network provides a Medicaid Plus benefit package, which includes primary care, specialty care, hospitalization, dental services, mental health services, pharmaceuticals, transportation, home health care, therapy services, care coordination by specially trained nurses, social services, health education, family counseling and community resource linkages. The Network is also authorized to provide early intervention services, parent support, respite, and genetic and nutritional counseling to the children enrolled. It is recognized as a Medicaid managed care option and a KidCare (the State Children’s Health Insurance Program - SCHIP) program through federal Medicaid waivers and state plan amendments.
Other available aspects of The Network include a Behavioral Health Network, a Children’s Multidisciplinary Assessment Team (CMAT) and Medical Foster Care. Behavioral services include both mental health and substance abuse services.
Program Eligibility. To be eligible for the CMS Network, children must meet both financial and medical requirements. They must have special health care needs that require medical services, therapies, supplies or equipment due to a chronic physical, behavioral or developmental condition. These children often need complex care requiring multiple providers, rehabilitation services and specialized equipment, in a number of different settings.
Children must also be financially eligible by being either a Medicaid recipient, a Florida KidCare enrollee under 19 years old, or a member of a family that meets certain financial criteria. Three categories of children are served: 1) those covered by Medicaid (Title XIX -71%); 2) those covered by SCHIP (Title XXI - 13%); and, 3) those not covered by either of those two funding sources (16%). This latter category is referred to as the Safety Net program. NOTE: A capped amount of funding is available for participants in the safety net program, and medically necessary services are provided until age 21, to the extent
that resources continue to exist.
For the period of July 1, 2001 – June 30, 2002, a total of 54,173 children were enrolled in the CMS Network via one of the three funding
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categories. It should be noted, however, that disability data are not collected by type for children served through The Network. Therefore these 54,173 enrollees are not necessarily all children with developmental disabilities. They are children with special health care needs (CSHCNs), some of which may include developmental disabilities.