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Waiting Lists

Statement

State agencies and service providers must deliver appropriate services and supports when requested and when needed by people with intellectual and related developmental disabilities* and their families.

Issue

Our constituents and their families may remain on waiting lists for years after requesting necessary services and supports. Frequently, educational gains are lost without ongoing support.

In many instances, people are not aware of the available services and supports and of alternative options that could result in faster and better services and supports. Thus they may fail to get on the waiting list or may be waiting for inadequate or inappropriate services and supports. They must often accept services and supports that are available but do not meet their actual wants and needs. Many are desperate and placed under extraordinary stress. To make matters worse, many states do not even maintain waiting lists.

Position

Needed services and supports must be funded by government and available for our constituents and their families when they request them. To ensure that people get the help they need, the following must occur:

• Public systems should actively reach out to individuals and to families to make them aware of the process to obtain services and supports.
• The process to determine eligibility and to plan necessary short- and long-term services and supports should occur promptly on request and be conducted by qualified personnel who are independent from the service provider and the funding agency.
• Individuals and families should be made aware of community service and support options whether they are readily available or need to be developed.
• Once a service or support option is agreed upon, it should be implemented as soon as possible but by no later than 90 days. This timeframe applies to those who require a change in services and supports as well as to those without services and support.
• In emergency situations, people should receive services and supports within hours.

Adopted:

AAIDD Board of Directors
May 28, 2002

The Arc, Congress of Delegates
November 9, 2002

“People with intellectual and/or developmental disabilities” refers to those defined by AAIDD classification and DSM IV. In everyday language they are frequently referred to as people with cognitive, intellectual and/or developmental disabilities although the professional and legal definitions of those terms both include others and exclude some defined by DSM IV.