On July 18, 2019 the Senate Special Committee on Aging held a hearing titled, “Supporting Economic Stability and Self-Sufficiency as Americans with Disabilities and Their Families Age.” ANCOR staff attended the hearing, which featured a researcher, self-advocate, family member and a Pennsylvania state official. Below are featured highlights from their testimonies.
Kelly Nye-Lengerman, PhD, Research Associate at the University of Minnesota, shared findings from her research:
Without paid employment, people with disabilities do not retire, nor have savings for later in life.
Families with a member with a disability have a drastically reduced ability to earn income and save due to high caregiving demands.
Supporting people with disabilities to live in family homes or their own homes is significantly less costly to society than housing them in group or institutional facilities.
Family caregivers are in urgent need of relief and support.
Benjamin Wright, family member and owner of the famed Bitty and Beau’s Café in North Carolina, shared the philosophy behind opening a café. The café employs people with disabilities, including but not limited to both his son and daughter: “People need a fresh perspective on this issue. They need to know and understand that people with I/DD are not broken. What is broken is the lens through which we view people with I/DD. Bitty & Beau’s Coffee is a new lens – and it’s changing the way people see other people – offering a new perspective that once seen – cannot be unseen.”
Edward Mitchell, Independent Living Specialist for the Jackson Area Center for Independent Living, shared the story of life after an injury paralyzed his legs and a portion of his trunk and hands. He explained the challenges he faces in having to work part-time jobs to not lose his benefits: “Working part-time and taking reduced salaries hurts my income. I have been gaining experience and have completed my Masters, but I can’t accept a full salary because it would impact my nursing benefits. If I accepted a full salary, I would make too much and lose my disability benefits but I would not make enough to directly pay for nursing care, even if I gave the home care agency my entire check. Of course, if I did that, then how would I pay for medical expenses, car insurance, car repairs and gas. I need money to have my vehicle maintained at a dealer who is 85 miles away, the only authorized mobility dealer in the area. And, I pay a portion of my income for rent to live at home. I don’t want to put more of a burden on my family.”
Jack Stollsteimer, Deputy Treasury for the State of Pennsylvania, shared information on the state’s ABLE accounts: “Currently our ABLE program has more than 1,400 accountholders with $8.3 million dollars under management, and each of those account owners has their own story as to why ABLE is the best option for them to save, pay bills, and make debit card purchases through their PA ABLE account. We have made so much progress – but we have so much more work to do. There are over 60,000 children with disabilities in Pennsylvania; with ongoing support from federal and state policy makers, our goal is to reach as many of them as we can.”
ANCOR supports legislation introduced in 2017 to improve on the 2014 ABLE Act so that it can be available to more individuals. One of the improvements includes increasing the age limit of individuals available to participate. This is particularly important because state ABLE Accounts are currently struggling to remain viable because the current pool of eligible individuals is too small. Members seeking to get involved on this topic can obtain more information from our Director of Legislative Affairs, Sarah Meek, at [email protected].
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