As Project & Information Specialist with The Arc, I get the opportunity to hear from people all over the country on a daily basis about the challenges people with intellectual disabilities and developmental disabilities (I/DD) and their families face in their attempt to obtain services and supports for their loved one. For the past 15 years, I have heard from parents, grandparents, siblings, other relatives, friends, professionals and advocates from all walks of life, and the same recurring theme is boiled down into one question: We’ve tried that…NOW WHAT?

These worn-out, desperate individuals have turned everywhere they could think of looking for basic services for their loved one and have either 1) never been able to access them, or 2) the services were recently stopped due to lack of funding. Families often call our office as a last resort, and that’s why we work tirelessly to make sure their voices are heard. In fact, The Arc recently published The FINDS Survey (a report on Family and Individual Needs for Disability Supports) which explains the current challenges families are facing, and gives the individuals with intellectual disabilities and family members themselves the opportunity to share their own dreams and hopes for the future, and clearly state where our nation falls short in providing basic supports and services.

For example, we found that more than 75% of families can’t find afterschool care, non-institutional community services, trained reliable home care providers, summer, residential, respite and other services. This makes it incredibly hard, if not impossible, for families to support their loved one to become as independent as possible in the community. Also of concern, 62% of families report that services are being cut in the community, limiting or eliminating access to community life altogether.

The FINDS Survey validates that although great strides have been made in the areas of education, employment and inclusion in the community, there are still significant ways our country is falling short in providing the tools and resources families need. You can take a stand today! Learn more about The Arc’s call to action in the FINDS report and find out how, together, we can work to achieve better lives for people with intellectual disabilities and their families!