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The Arc Landmark Report

May 22, 2012


The Arc’s Landmark Report: Still In The Shadows With Their Future Uncertain


The Families and Individual Needs for Disability Support (FINDS) – Key Findings


Key Findings, June 2011

Background: People with intellectual and developmental disabilities (I/DD) are among the most vulnerable in this economic climate. Seven million people, including more than 1.25 million children, with I/DD are living in the United States, and most live with their families and are in precarious financial situations. The Arc’s national web-based Family and Individual Needs for Disability Supports (FINDS) survey focused on educational, housing, employment and support needs of people with disabilities. FINDS reached more than 5,000 parents, siblings and other caregivers or support providers and was launched on July 22, 2010 and was available until October 31, 2010. The survey was widely disseminated through a variety of groups and through public media announcement. Groups that participated in dissemination of the survey included: the Association of University Centers on Disabilities (ACUD), the American Association on Intellectual and Developmental Disabilities (AAID), the American Network of Community Options and Resources (ANCOR), the National Association of Councils on Developmental Disabilities (NACDD), Self-Advocates Becoming Empowered (SABE), the National Council on Independent Living (NCIL), The Arc, Best Buddies, Easter Seals and the Autism Society of America (ASA). Families from all 50 states and D.C. completed surveys. People with disabilities responded from 38 states and D.C.

Among the key findings:

Budget cuts and economic strain have hurt all Americans, but those living with intellectual and developmental disabilities and their families are being the hardest hit with access to services being drastically reduced

·         One out of five families report that someone in the family had to quit their job so stay home and support the needs of their family member. 


·         58 percent of parents/caregivers report spending more than 40 hours/week providing support for their loved one with IDD, with 40% spending more than 80 hours week.


·         More than 80 percent of families reported not having enough retirement savings for their future as a result of using personal funds to compensate for the lack of services available to their loved ones.  

·         62 percent of caregivers report that the level of services for their family member with disability is decreasing.

·         Most people with I/DD (78 percent) live with their families.

Millions of people with intellectual and developmental disabilities are experiencing appalling wait times – an average of 5.3 years – for access to the most fundamental services including transportation, housing, managing finances, employment supports and personal assistance


·         One-third (32%) of parents/caregivers, potentially 1 million families or more, report that they are on waiting lists for government funded services, with the average wait more than five years.


·         More than 75 percent of families report it is a problem to find afterschool care, non-institutional community care, trained reliable home care providers, summer care, residential care, respite and other services.

  • 43 percent of caregivers report that schools are cutting back on services like physical therapy, occupational therapy and speech therapies. 

·         Most families are not satisfied with the quantity of government funded personal supports (73 percent), housing (77 percent), transportation (78 percent), employment (77 percent), therapy (79 percent) or respite (78 percent) services that they are receiving.


The future is uncertain. The majority of people with I/DD live with their parents and families – not on their own.   As a result of diminished services, people with I/DD are being confined to their family home, with less human interaction, education and employment, and the care they need


·         62 percent of parents/caregivers don’t have a plan for where the person they support will live when the parent/caregiver gets older. 


·         58% of family caregivers are 51 years of age or older.


·         52 percent of families reported that their family member with I/DD left school without receiving a high school diploma, including 10 percent that never finished high school.


85 percent of families reported that their adult family members with I/DD were not employed, either part-time or full-time. 

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