Adults with SMA

Cure SMA is committed to supporting all members of the SMA community, including adults with SMA.

Many individuals with SMA type II or III have normal or near-normal lifespans. As they move into adulthood, questions about employment, independent living, marriage and family often come to the forefront.

Individuals with SMA type IV have their own unique challenges, as symptoms typically do not begin until age 35 or later. Individuals with SMA type IV have often established a job, living situation, and perhaps marriage and/or children—and must consider how an SMA diagnosis may alter these things.

Employment

The Americans with Disabilities Act requires an employer to make reasonable accommodations for an individual with disabilities. 

The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) sponsors the Job Accommodation Network (JAN). This organization assists individuals in finding jobs and understanding their rights in the workplace. JAN also works with employers who have questions about the best way to accommodate and integrate individuals with disabilities.

For individuals with SMA who want to start their own company, the U.S. Small Business Association (SBA) provides resources for entrepreneurs with disabilities. Though the SBA does not have a loan program specifically for entrepreneurs with disabilities, these individuals can apply for a standard SBA loan.

Living Situations

Adults with SMA must consider several factors when choosing a living situation. These may include:

  • Will you live alone? With family or friends? In a group setting?
  • Will you require full- or part-time caregiving? Will these be personal aides, skilled nurses, or a combination? 
  • If caregivers must be paid, how will that be funded? Through insurance? Or another source?

Many individuals have found Centers for Independent Living to be helpful in making these choices.

You may also consider how you will get to and from work or out to run errands. No matter what situation is chosen, the home environment should be safe and accessible.

Helpful Links

Many adults with SMA have found the following resources useful:

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