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As we celebrate National Disability Employment Awareness Month, I’ve picked one specific federal policy barrier to discuss.

Before I do, I want to share with you the loss of Paul Spooner, Executive Director of the MetroWest Independent Living Center, who passed away unexpectedly this weekend. Employment was only one part of his tremendous work.

When I met Paul in 1991, we were involved with others in a tough PCA campaign. Paul was, then and now, a most influential leader who moved progressive policy for PCA services, health care, and every area necessary for persons with disabilities.

Paul’s role in national organizations led to a close relationship with Senator Tom Harkin and others in D.C  Paul championed the “Independent Living Movement” in all he did, and his life partner, Winifred McGraw, shared the mission with him.  You can learn more about Paul, and the service that will be held on October 15, here. 

In 1945, President Truman established National Disability Employment Awareness Month and issued the first national call for disabled people to access all the opportunities and rewards of work.  But it wasn’t until 1956 that President Dwight D. Eisenhower signed the Social Security Act Amendments into law, establishing the SSDI program as we know it, including coverage of children who are disabled before the age of 18 years.

Persons with disabilities, especially those with IDD who often qualify when a parent retires, fear losing the benefits and Medicare with it, if they earn too much money. The limit to trigger benefit loss has always been very low, and in 2023, it’s $1,470 per month if you are not blind.

In Massachusetts, working 23 hours per week at minimum wage will be enough to exceed that amount – and even fewer hours if working at jobs which pay more than minimum wage, which many of our constituents are very capable of doing.

This policy is known as substantial gainful activity or SGA. Our national and state offices are working to increase this limit, and there will be proposals in the new legislative session.  You can learn more about Social Security and SGA here. 

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