The Arc recently had the opportunity to measure the urgent, unmet needs of individuals and families living with IDD and find out where our society is succeeding in offering them support and where we’re falling short. In conjunction with researchers at the University of Minnesota, we conducted an unprecedented survey of more than 5000 individuals with IDD, their family members and caregivers covering a host of issues from education to housing to planning for the future and discovered that many with IDD are unnecessarily living in the shadows of society for lack of support to meet their most basic needs.

This week, we released the top findings from that survey in a publication called Still in the Shadows with Their Future Uncertain and outlined the steps we need to take as individuals, as families, as advocates and as a country to address the most pressing needs. Here are just a few of the most dramatic findings from the survey that should inspire us to action.

• 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.

We invite you to read the full report available now and join us in our movement through the call to action outlined in the report. Or, find out more about how you can get involved with The Arc to help bring about positive change, offer opportunity and foster hope for people with IDD everywhere.