Independent Living with SMA

Reviewed by: HU Medical Review Board | Last reviewed: August 2021

A common concern for adults with spinal muscular atrophy (SMA) is a loss of independence. As muscle weakness worsens over time, adults with SMA may lose some physical mobility. This can lead to more dependence on others with daily tasks.

However, it is still possible for adults with SMA to practice independent living. This refers to the ability to make your own decisions about daily life. Many different living situations can provide people with SMA the opportunity to live independently.

What is independent living?

Independent living is the ability to make choices about your own life. It is controlling where you live and having the same choices as people without SMA. Independent living does not mean living alone. Rather, it means having the freedom to choose how you live.1

Achieving independence is a common worry for adults with SMA. Some adults with SMA live with complete physical and economic independence. Others may need help with daily tasks or have limited daily choices. There are ways for all adults with SMA to practice independent living. How to achieve this depends on your specific needs.2,3

Transitioning to independent life can be stressful and scary for any adult. It can be even more stressful for adults with SMA trying to balance finding housing, taking care of their health, and becoming independent. Navigating housing and healthcare systems at the same time can be overwhelming. Consider using counseling and other mental health services to help learn how to cope with stress and anxiety during the transition.4

How does SMA affect independent living?

Adults with SMA can live in many different situations. Many live alone in a home or an apartment. Others live with family members, partners, or roommates. Some live in assisted or independent living communities.5

Symptoms of SMA can make independent living harder, depending on severity. Every person with SMA is different and needs unique levels of support in daily life.

For example, some adults may be completely independent with ramps and other accessible housing features. Others may need around-the-clock personal assistance. In general, all adults with SMA benefit from accessible housing where they can receive all needed healthcare.5

Talk to a social worker for help finding resources for independent housing. They can refer you to public housing and other agencies to locate accessible or affordable housing. Occupational therapists can suggest technologies and modifications to improve accessibility.

What home modifications can improve independent living?

Certain modifications can make the home environment more accessible. Finding the right adjustments for you can increase your independence with daily tasks. Every person with SMA has different needs that can improve independence.

Work closely with occupational therapists and building professionals to make changes that are right for you. This may include:6,7

  • Widening doorways and making entrances accessible
  • Installing grab bars, chairs, and benches in the shower
  • Adjusting heights of beds, sinks, and counters
  • Moving common items to accessible locations

Some of these changes may be small and cheap fixes. Others may be larger renovations that are more expensive. Talk to your insurance company, a social worker, or an SMA advocacy group for help finding financial assistance for these renovations.6

What are centers for independent living?

The term “center for independent living” (CIL) refers to a community operated by people with disabilities to provide independent living services. These centers support community living and independence by providing various resources. A CIL can provide many services, including:1,8

  • Information and referral
  • Independent living skills training
  • Individual advocacy
  • Peer counseling
  • Help transitioning from a nursing home or other living situation
  • Help for children transitioning after completing secondary education

CILs help give adults with disabilities the opportunity to choose where they live and make decisions about their lives. For many adults with SMA, community living can help them live a more independent life. Every state receives funds to operate CILs. You can find CILs in your state online.

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