In 2010, The Arc conducted a national internet survey to capture the perspectives of people with intellectual and or developmental disabilities (I/DD) and their family caregivers. Much of the data supports The Arc’s Don’t Cut Our Lifeline campaign. The Family and Individual Needs for Disability Supports (FINDS) survey focused on issues including educational, housing, employment and support needs of people with ID/DD and their families. More than 5,287 family respondents participated in the survey; of these, three-quarters shared their home with a person with ID/DD. Overall, 95 percent of respondents were parents, siblings, children, grandparents or other relatives of a person with ID/DD.

Family caregivers in 2010 reported substantial ongoing challenges to providing lifelong supports to family members with intellectual or developmental disabilities. People with ID/DD and their families face very real challenges to achieving their aspirations for the future, and decreasing benefits from Medicaid will only continue to hamper such aspirations and millions of lives.

Supports provided by Family Caregivers

• Most family caregivers (58%) provide more than 40 hours of unpaid care per week and 40% provide more than 80 hours of unpaid care per week. This interferes with their work (71%) and causes physical (88%) and financial strain (81%).
• Nearly two-thirds of family caregivers (62%) are paying for some care out of pocket. Family caregivers struggle to find afterschool care (80%), reliable home care providers (84%) and community-based care (82%).
• They report paying for more services out of pocket (47%) and providing more support than they used to (41%).
• Fifty-two percent (52%) of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program;
• People with severe ID/DD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild ID/DD were more likely to have received supports from a family member paid out of personal or family sources (56%), most often the personal income of a parent, family member or other caregiver.

Challenges

• Family caregivers report that 25% of the people with ID/DD had no source of
• income. Only 15% of the people reported being employed.
• Overall, 62% report experiencing decreases in services and 32% were waiting
• for government funded services, most for more than 5 years.
• 20% of family caregivers reported that someone in the family had to quit their job to support the person with ID/DD.
• More than 40% of family caregivers reported the person with ID/DD had unmet support needs during the last year for running errands or seeing a doctor (48%), managing finances (46%), transportation (45%) and household management (41%).
• 43% report that schools have cut back on services such as physical, occupational or speech therapies;
• Nearly two-thirds of all family caregivers worry that the person they care for might have to go somewhere they don’t want to live.