Funding is scarce, families are stressed, people with intellectual and developmental disabilities (I/DD) are not being given the opportunities they deserve to live up to their full potential. We have known that intuitively for some time. Now, we have taken steps to measure the needs of individuals and families living with I/DD and find out where we’re succeeding in offering them support and where we’re falling short. The Arc, in conjunction with researchers at the University of Minnesota, conducted an unprecedented survey of more than 5000 individuals with I/DD, their family members and caregivers covering a host of issues from education to housing to planning for the future.
Today, The Arc released the top findings in a publication called Still in the Shadows with Their Future Uncertain and outlined the steps we need to take as a movement to address the unmet needs highlighted in the survey. With deep budget cuts and the proposed restructuring of essential services such as Medicaid, there is a real fear that our society may regress toward the institutional services we have been working to end for more than 50 years. But community and family-based caregiving options need to be supported in a way that actually benefits individuals and families, which is not always the case. Here are just a few of the most dramatic findings from the survey.
62% of caregivers report that the level of services for their family member with a mild or moderate disability is decreasing; 70% of families with severe disabilities report a decrease in services.
72% of family respondents provide direct financial support to their family member with disabilities and 52% of families are paying for care out of their own income.
More than 80% 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 one.
Read the full report available now and join us in our movement through the call to action we outlined.