Persons with Intellectual and Other Developmental Disabilities

Nationwide, there are about 4.3 million citizens with intellectual (e.g., mental retardation) and/or other developmental disabilities (e.g., cerebral palsy, spina bifida, autism), or about 1.5 percent of the U.S. population.  They all experienced disability before age 22 (often at birth) and their disabilities are lifelong.  These individuals cross the entire age spectrum.  The majority of them are children; about 40 percent are adults.  People with intellectual and/or other developmental disabilities have substantial functional limitations that significantly impede their ability to perform major life activities without assistance.  Only about 10 per cent of these individuals receive services in publicly-funded residential settings.  The rest live with their families or on their own.  Over 700,000 individuals are supported by family caregivers who are over the age of 60.

Medicaid Beneficiaries with Developmental Disabilities

•  There are an estimated 1.8 to 2.0 million Medicaid beneficiaries with intellectual and/or other developmental disabilities.  They account for about 25% of all Medicaid beneficiaries who have disabilities of any type.  Less than one-half of all citizens with intellectual and/or other developmental disabilities are Medicaid beneficiaries.

• Eligibility for Medicaid varies state-by-state.  Only nineteen states extend Medicaid eligibility to people with disabilities whose income reaches the federal poverty line ($9,570 in 2005).  In most states, eligibility is limited to individuals whose income is below the poverty line.

•  Medicaid is the sole source of health care for most of these individuals.  Some individuals receive both Medicaid and Medicare benefits.  Adult Medicaid beneficiaries with intellectual and other developmental disabilities are too poor to afford private health insurance.  Absent Medicaid, they would have no reliable health care.

•  Children with disabilities may be covered by their families’ health insurance.  However, that insurance usually does not cover the full range of benefits that these children need and can obtain through the Medicaid Early and Periodic Screening, Diagnosis and Treatment benefit. 

• Neither Medicare nor private health insurance covers the types of ongoing long-term services that people with developmental disabilities need.

•  Like other Medicaid beneficiaries, people with intellectual and/or other developmental disabilities often encounter problems in finding health care providers in their communities who accept Medicaid.  There is an acute shortage of health care providers who have the skills to treat the frequently complex conditions experienced by individuals with these disabilities, thus placing the health and well-being of such individuals in jeopardy.

• Over one million Medicaid beneficiaries with developmental disabilities are child and adult Supplement Security Income (SSI) recipients.  Plus, approximately, half a million Medicaid beneficiaries with developmental disabilities qualify for Social Security Adult Disabled Children’s (DAC) benefits.  In both cases, these beneficiaries have been determined by the Social Security Administration to have major life-long disabilities and substantial functional limitations.

• Nearly all Medicaid beneficiaries with developmental disabilities are poor. Federal SSI benefits currently are pegged at 73% of the federal poverty level and are insufficient to meet daily living expenses.  DAC payments also fall below the poverty line. And, only a small percentage of adults are able to secure employment to supplement their federal cash assistance benefits. Many child SSI beneficiaries live in low-income households.  Children with severe disabilities, who live in higher income households, on the other hand, usually cannot qualify for Medicaid benefits in most states.

Medicaid Long-Term Services

Medicaid underwrites the costs of long-term services for more than 500,000 individuals with intellectual and/or other developmental disabilities, principally through the facility-based Intermediate Care Facility for the Mentally Retarded (ICF/MR) program and the Home and Community-Based Services (HCBS) waiver program.  Eligibility for these programs is the same – a person must require significant personal and other assistance day-by-day.  The HCBS waiver program permits a state to offer a wide range of services and supports in the community to individuals who live with their families, on their own, or in other community living arrangements.  But, states have the authority to cap the number of persons served through such waivers.

Over the past decade, the use of costly ICF/MR facilities has been reduced in favor of expanding more flexible and cost-effective waiver services that yield demonstrably better outcomes for individuals.  As a result, the average cost of Medicaid long-term services per individual declined by 18.3 percent between 1993 and 2004, after adjusting for inflation.  System rebalancing has enabled states to serve more individuals.  States also are initiating other measures to improve the cost-effectiveness of long-term services, including providing improved services to people who live with their families in order to avoid costly out-of-home placements, expanding the use of self-direction, and implementing new resource allocation models to better align dollars with needs.

Going forward, there are three major challenges in meeting the long-term services needs of people with intellectual and/or other developmental disabilities.  First, the number of individuals who will need day-by-day supports is expected to grow by nearly 40 percent between 2003 and 2020.  Second, in order to meet this increased demand, more than 300,000 direct support and other professionals will need to be recruited – a very challenging undertaking given the fact that the available labor pool to fill these jobs is expected to grow at a much slower rate than in past years.  Third, it will be vital to reverse the long-term shrinkage in the number of providers willing to furnish services and supports to individuals with disabilities and their families.

2004: Facts and Figures

• number of individuals who benefited from such services in 1994.

•  Despite the increase in the number of people receiving Medicaid long-term services, lengthy waiting lists remain for these services in nearly all states.  In Florida, Louisiana and Texas alone, about 70,000 people are waiting for HCBS waiver services.  Nationwide, potentially 200,000 or more individuals are waiting for Medicaid long-term services.  States are continuing to experience rapidly rising demand for long-term services.

• Access to Medicaid long-term services varies markedly state-to-state. There are wide differences in the number of individuals with intellectual and other developmental disabilities who receive these services relative to state population.  Also, there are major differences among the states in the types and amount of long-term services that are provided to such beneficiaries.

•  87.9 percent of the persons who received Medicaid long-term services were supported through the HCBS waiver program or in small community-based ICF/MR living arrangements.

• Total state-federal Medicaid outlays for these long-term services were $27.4 billion.  The federal share of these expenditures was $16.3 billion.

• Federal Medicaid outlays for long-term services to people with intellectual and other developmental disabilities represented 9.7 percent of total federal Medicaid expenditures for all types of services, about the same share as in 1997.

• Medicaid outlays for long-term services for the ID/DD population accounted for 30.7 percent of total Medicaid long-term services expenditures for all populations.

• Federal-state expenditures for ICF/MR services were $11.9 billion.  Adjusted for inflation, these expenditures have not changed since 1994.

• The number of persons served in high cost ICFs/MR declined by 26.5 percent between 1994 and 2004.  During the same period, the number of persons supported through the more cost effective HCBS waiver program increased from 122,075 to 424,855 individuals.

• 43.4 percent of HCBS waiver participants with developmental disabilities lived with their families.  Another 18.2 percent were supported in their own homes.

• The number of persons served in large ICF-MR funded state institutions fell by 37.1 percent between 1994 and 2004, declining to 41,653 persons.  In 2004, fewer than 8 percent of all individuals who received Medicaid long-term services were served in these facilities compared to approximately 25 percent in 1994.

References

Robert W. Prouty, Gary Smith and K. Charlie Lakin (eds.) (2005).  Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2004.  Minneapolis: University of Minnesota, Research and Training Center on Community Living

K. Charlie Lakin, Amy Hewitt and Sheryl Larson (2005).  The Supply of Direct Support Professionals Serving Individuals with Intellectual Disabilities and Other Developmental Disabilities.  Minneapolis: University of Minnesota, Research and Training Center on Community Living.

Roger J. Stancliffe and K. Charlie Lakin (2004).  Policy Research Brief: Costs and Outcomes of Community Services for Persons with Intellectual and Developmental Disabilities.  Minneapolis: University of Minnesota, Research and Training Center on Community Living.

Richard Hemp & David Braddock (2003).  Ten Questions: On the Role of Medicaid for Persons with Developmental Disabilities in the United States.  Boulder, Colorado: University of Colorado, Department of Psychiatry and Coleman Institute for Cognitive Disabilities.

Larson et al. (2000).  MR/DD Data Brief: Prevalence of Mental Retardation and/or Developmental Disabilities: Analysis of the 1994/1995 NHIS-D.  Minneapolis: University of Minnesota, Research and Training Center on Community Living