The Arc’s amazing network of advocates has been working tirelessly to ensure that Medicaid does not suffer budget cuts with the “Don’t Cut Our Lifeline Campaign.” From the debt ceiling negotiations earlier this summer to current outreach to Members of Congress to ensure that individuals who rely on Medicaid do not lose essential services, our advocates have been busy this summer!

Hearing personal stories from individuals with intellectual and developmental disabilities (IDD) and their families has helped make Members of Congress stop seeing Medicaid as just another entitlement program and see it as an important lifeline for millions of Americans. While these stories have helped to enlighten elected officials, many still don’t see the true scope of what Medicaid means to families across the country. This is where The Arc’s FINDS (The Family and Individual Needs for Disability Supports) Survey can help.

Have you read the report on The FINDS survey yet? You should. The startling results provide supporting data for the “Don’t Cut Our Lifeline” campaign. With over 5,000 parents, siblings, children, grandparents and relatives of individuals with IDD surveyed, the results can’t be ignored. Most telling was the insight from caregivers about how they provide for the supports for their loved ones with IDD:

• Fifty-two percent of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program
• People with severe IDD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild IDD 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
• 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%)

The challenges facing family caregivers also provide support for the “Don’t Cut Our Lifeline” campaign:

• Overall, 62% report experiencing decreases in services and 32% were waiting for government funded services, most for more than 5 years
• More than 40% of family caregivers reported the person with IDD 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%)

Many of you are living the reality behind these data points. The survey is a powerful tool you can use to get that point across to Members of Congress or others who can help the millions of families and individuals who depend on Medicaid. Find more information about how the FINDS results support the “Don’t Cut Our Lifeline” campaign.