We can, We will, We must end the wait - TOGETHER
The Waitlist Problem
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History
Until the 1960s, people with developmental disabilities received services in large institutions or their family provided care with little in the way of government support. Class action law suits and intense scrutiny of the horrifying conditions in institutions led to public outcry and change. The Community Mental Health Act of 1963 began the deinstitutionalization of people with developmental disabilities (and mental health issues). Medicaid was created in 1965 to provide care for this population and others. In 1972, Title XIX of Medicaid program added a new benefit called Intermediate Care Facilities (ICF/MR) Most ICFs are large congregate care facilities focused on intensive medical or behavioral intervention, and they are both public and privately operated. The Americans With Disabilities Act of 1990 contained an 'integration mandate' that requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities." In 1999, the Olmstead decision of the Supreme Court upheld the ADAs integration mandate when the state of Georgia appealed to enforce institutionalization.
Approximately 4 million Americans have developmental disabilities. These individuals attend school, usually until they are 21 years old. At that point, they move into the adult services category and should receive services through "Home and Community-based Waivers." Because Waivers are not an entitlement, in almost all states they are not fully funded to meet the need and involve variations in the types and intensity of services and supports that are offered. This results in waitlists and lack of portability of services from one state to another and one county to another. The time periods people can be left waiting for help obtaining job services, a community-based program, or a secure home in which to live can be anywhere from five to twenty years long, depending upon the state and the type of service needed.
Tens of thousands of people are on waitlists for Waiver services. Few families can afford to pay out-of-pocket for these services (an average of $35,000 - $75,000) per year for host or group home placements because parents have had to leave careers to care for their children and pay for large medical bills.
The result of this lack of access to services is that people with developmental disabilities sit at home with their parents with nothing to do and nowhere to go. Most often one of their parents must leave their employment to stay at home to take care of them. And as the parents age, older adults with disabilities especially those in the "baby boom" generation often have no one to care for them and the entire family is in crisis. We know many parents in their 70s and 80s needing care themselves who continue to care-give for their sons and daughters in very difficult situations. There are many cases where parents have passed away, leaving their adult child without a place to live. In cases where parents have found their adult children cannot be managed at home because of severe behavioral issues, or physical problems they, too, wait for disaster to strike. When these families do not even have access to long-term care for their loved ones or choices for that care near their homes, the rights of these individuals are denied. Families are even unable to move to other states or counties to accept better jobs, for example, because the price they may pay for doing so would be that their adult child will lose all of their services and go to the end of the line in their new state home. Parents and sometimes siblings who have been left to care for these individuals are strained to their limits having to advocate daily in their communities, through their legislators and others just to obtain these basic human services.
Essentially, we have regressed back to the 1960s, when parents and families had no support in taking care of their loved ones with developmental disabilities.
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Presentation About the Wait List
Watch a presentation about the Wait List Problem
State Efforts
NOEWAIT is currently collecting data on the depth of the wait list problem for every state in the country. This data will be published on our website in the near future.
Coalitions have been formed in several states to address wait lists on the state level. These include:
Colorado (NEW Website)
If you know of other campaigns, please contact us an we will add them to our site.
News Articles
National:
Keeping Track: National Disability Status and Program Performance Indicators
By State:
Alabama
Conference call info-Department of Mental Illness/Mental Retardation
Alaska
Advocacy group rallies in SoldotnaHope Community Resources seeks funding for people with disabilities
JESSICA CEJNAR, Peninsula Clarion
Colorado
Sales-tax increase proposed to help disabled.
Autism Society of Colorado
Panel to target backlog of disabled adults in need
Alan Gathright, Rocky Mountain News
Colorado Springs Gazette
Tax boost sought to help disabled
There are 8,027 people on a state-assistance waiting list that's 15 years long. The issue could go before voters in 2008.
By Jennifer Brown, Denver Post Staff Writer
Proposed sales tax hike to help disabled shelved
April M. Washington, Rocky Mountain News
Conneticut
Meeting the Needs of DMR Clients
Despite the difficult financial situation facing the state in the upcoming biennium, the Governor’s budget
recommends substantial funding for continuing the multi-year commitment to meet the needs of hundreds
of families and clients waiting for services from the Department of Mental Retardation.
AN ACT PROVIDING FUNDS FOR THE DEPARTMENT OF MENTAL RETARDATION (DMR) WAITING LIST.
District of Columbia
Opening the Door To Independent Living
Florida
Powerpoint Presentation about Florida's Wait List
Disabled Florida Adults May Face Eviction from Group Homes Due to Budget Cuts.
The Orlando Sentinel (Orlando, Florida) (via Knight-Ridder/Tribune Business News)
By Sue Anne Pressley Montes, Washington Post Staff Writer
Georgia
Advocates want more funding to help social and health programs.
By Brandon Larrabee, The Times-Union
Thousands Brave Rain For Disability Day
Advocates Want Opportunities For Disabled
CBS46
Illinois
Families Sue To Keep People Close
Arc of Illinois
Indiana
New system helps recent graduates with disabilities NEW!
By Meranda Watling • mwatling@journalandcourier.com • June 14, 2008
Maryland
Waiting list grows for those needing disability services
Examiner.com
Massachusetts
People First, Volume II - State Data
Missouri
Statement from the State regarding wait lists
New Jersey
Note to readers:
Several articles have been written this year about a lawsuit against the state of NJ about the lack of housing for the disabled. We previously listed these articles, which have now expired. We will add more news as it becomes available.
Nevada
Ohio
Levy sought to help funding keep pace with client list
Columbus Dispatch
Mountvernon News
Pennsylvania
State budget: $27 million allotted for mental retardation waiting list
By Ann Belser, Pittsburgh Post-Gazette
Tight funds deny services to state's mentally disabled
To get care, some of the more than 22,000 mentally retarded adults in Pa. have to fight for the spot of
someone who dies
By Ann Belser, Pittsburgh Post-Gazette
Tennessee
Family seeks resources for 14-year-old daughter who has cerebral palsy
Published 04/19/2008 By Christan M. Thomas, Timesnews
Texas
Texas Punishes 800 for Abusing State School Residents
original article was in the Houston Chronicle
Thousands of disabled Texans on waiting list for in-home care
90,000 Texans wait to join state programs for health services that help them live at home
Two lawmakers seek to cut waiting lists
By Corrie MacLaggan, AMERICAN-STATESMAN STAFF
Virginia
For Virginians With Disabilities, Waiting List Growing Faster than Aid NEW!
By Elizabeth Simpson
The Virginian-Pilot
Arc hoping for state generosity
By Jessica J. Burchard, The Winchester Star
Programs to Aid Mentally Disabled Could Receive a Boost in Funding
By Chris L. Jenkins, Washington Post Staff Writer
Washington
A past enveloped in love, a future that's uncertain
By Maureen O'Hagan
Seattle Times staff reporter
Wisconsin
On the spectrum - autism diagnoses continue to increaseNEW!
By Rachel White, Lakeland Times
We can't wait for services, group says
It asks for more support for people with disabilities
By SCOTT WILLIAMS, Milwaukee Journal Sentinel
Wyoming
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