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The What's New & Urgent? page contains all of the entries that have been posted in the left column.
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The Resources page has links to Web sites and documents like our Annual Report, newsletters, brochures, and Powerpoint presentations.
Visit our About Waitlists page to find out how waitlists affect people with intellectual and developmental disabilities and their families.
Visit Our Plan page to learn how NOEWAIT is taking action on waitlists and what you can do to help.
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Until the 1960’s, 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 ICF’s are large congregate care facilities focused on intensive medical or behavioral intervention, and they are both publicly 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 ADA’s 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 70’s and 80’s 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, were have regressed back to the 1960’s, when parents and families had no support in taking care of their loved ones with developmental disabilities.