Waiting Lists

Statement

State agencies and service providers must deliver appropriate services and supports when requested and when needed by people with intellectual and developmental disabilities (IDD)* 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

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*
Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).

Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act,”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.

The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.