SMA Community Seeks SSI Improvements on Program’s 50th Anniversary

Fifty years ago today, the Supplemental Security Income (SSI) program was created to “provide supplemental security income to individuals who have attained age 65 or are blind or disabled” for their basic living needs, such as housing, clothing, medical costs, and food. The program and its monthly cash benefit have been a lifeline for many individuals with spinal muscular atrophy (SMA) and other people with disabilities.

“I have not found a job because a lack of accessible job opportunities for individuals with disabilities, so SSI is how my husband and I afford to pay for necessities in order to live,” said a 26-year-old woman with SMA from Ohio.

However, the program is long overdue for an update to better reflect today’s living costs.

For example, individuals cannot have more than $2,000 in countable resources (or $3,000 for a married couple) to qualify for and remain eligible for SSI. The individual asset limit was $1,500 when the program was created in 1972, meaning the limit has increased by only $500 in five decades. “An asset limit of $2,000 is ridiculous, especially given inflation,” said a Virginia mother of 4, including a child with SMA.

“That might have been enough 50 years ago, but not today with how much everything costs.” A 31-year-old California woman with SMA had similar views. “Because of the low limit, it is impossible to be able to save for any emergencies that may come up, such as car repair, broken appliances, or even for retirement in the future for people that can partially work.”

Cure SMA, which represents children and adults with SMA, is urging Congress to modernize SSI, including changes to the asset limit. Cure SMA supports a bipartisan effort to increase the SSI asset limits to $10,000 for an individual and $20,000 for a couple. In addition, the Cure SMA-supported legislation would index the increased asset limits to inflation so the limits better align with future living expenses. “There is no reason why individuals with disabilities should be penalized for saving for their future and for short-term emergencies,” said Maynard Friesz, Vice President of Policy and Advocacy for Cure SMA. “We urge Congress to act on this important change before it wraps up its final session of the 117th Congress.”

The SMA community has actively engaged in Congress in support of increasing the SSI asset limit. Many individuals with SMA and parents of children with SMA say this common-sense change is needed to help encourage savings, improve financial security and independence, and to meet unexpected emergencies.

  • “The asset limit keeps me from putting money away for a new accessible vehicle I might need down the road. It prevents me from saving up for non-covered options on new wheelchairs down the road,” said a Missouri mom with a teenager with SMA.
  • “With this limit, you are not prepared to cover any unexpected financial burdens,” said a 45-year-old woman with SMA from Georgia.
  • “An increase in the SSI asset limit would allow me to save more and be able to afford better safer housing,” said a 63-year-old man with SMA.
  • “If the asset limit were to increase, I would be able to set aside funds for emergencies meanwhile have more means to cover existing bills and expenses. I wouldn’t feel like I am constantly on the borderline,” said a Minnesota mother of a child with SMA.

In addition to the asset limit change, Cure SMA also supports other improvements to SSI, including an end to the marriage penalty and the elimination of the in-kind support and maintenance calculation. Currently, SSI monthly benefits and asset limits are reduced if an SSI beneficiary is married. “I am not married yet, but my partner and I want to get married in the future without the fear of me losing Medicaid benefits. We should not be penalized for loving and wanting to be with another person,” a 26-year-old Hawaii woman with SMA said about the SSI marriage penalty. Under the in-kind rule, food, shelter, and other resources an SSI beneficiary receives from family or friends count as income. “Not counting in-kind support would allow people with disabilities more freedom and independence in their life choices,” said a 43-year-old New York man with SMA. An adult with SMA agreed, “A gift should be able to be given by a friend/family member and received by a person with a disability without fear of consequence.” Cure SMA collaborates with other national organizations to help advocate for changes that will improve the financial security and independence of individuals with disabilities, including SMA.

Interested in helping?

You can help educate your Members of Congress about the need to increase the asset limit through Cure SMA’s Action Center. Thank you to those who have already taken action and to SMA community members who shared their views on the SSI program.

Do you like what you're reading?

Help make a difference in the lives of people affected by spinal muscular atrophy.

Scroll to Top