New survey explores needs for disability

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 actually 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.

On June 14, The Arc released the top findings in a publication called Still in the Shadows with Their Future Uncertain and outline the steps we need to take as a movement to address the unmet needs highlighted in the survey. Although individuals with disabilities have more opportunities than did previous generations, they face some very real challenges in realizing their dreams and even in protecting the progress they have achieved in the last few decades.

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.

• One out of five families (20 percent) report that someone in the family had to quit a job to stay at home and support the needs of a family member.

• More than 80 percent 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 ones.

• 62 percent of parents and caregivers don’t have a plan for where the person they support will live when the parent/caregiver gets older.

• 35 percent of caregivers reported needing special equipment, technology or assistive devices with 67 percent reporting that they can’t afford it.

Read the full report: Still in the Shadows with Their Future Uncertain available on www.thearc.org and find out more about how you can get involved with The Arc of Mower County to help bring about positive change, offer opportunity and foster hope for people with I/DD in your community.