One of the most comprehensive pictures of the status of families and caregivers living with people with intellectual or developmental disabilities is provided in the Family and Individual Needs for Disability Support (FINDS) Survey, sponsored by the Arc of the United States and conducted by researchers at the University of Minnesota.
The 2010 FINDS Survey provides a vivid portrayal of the additional financial and emotional strain that families members of people with intellectual or developmental disability face. The report describes:
“People with ID/DD and their families face very real challenges to achieving their aspirations for the future. Family caregivers report that 20% of the people with ID/DD had no source of income. Overall, 62% report experiencing decreases in services and nearly a third were waiting for government funded services (32%), most for more than 5 years. They report paying for more services out of pocket (47%) and are providing more support than they used to (41%). Most family caregivers (58%) provide more than 40 hours of care per week (including 40% who provide more than 80 hours of care per week). This interferes with their work (71%) and causes physical (88%) and financial strain (81%). One-fifth of family caregivers report that someone in their family had to quit work to provide care. Nearly two-thirds of family caregivers (62%) are paying for some care out of pocket. Family caregivers also struggle to find afterschool care (80%), reliable home care providers (84%) and community-based care (82%).”
The data also show, however, that organizations like The Arc and Special Olympics are helping to meet the needs of people with intellectual disabilities and their families. One in four of respondents with intellectual or developmental disabilities used supports provided by Special Olympics, making it the most commonly used state or national organization. In addition, more than 30 percent of family members supporting people with an intellectual disability reported receiving support from Special Olympics.
The FINDS Survey reinforces what we hear every day, both on and off of the playing field: people with intellectual disabilities and their families are routinely excluded, marginalized, and left to fend for themselves. Social sector organizations like Special Olympics aren’t just fun and games; they fill critical needs of people with intellectual disabilities and their families.