One Snap Shot
From NMD United’s First Needs Assessment
ABOUT THE SURVEY
- 94 people participated in the survey during April 2013.
- 64 were female.
- 80 listed locations within the USA.
- 65 were diagnosed with Spinal Muscular Atrophy.
- Only 20% of those surveyed stated that their homes were fully accessible.
- 82% used out-of-pocket funds to pay for housing modifications.
- 45% of respondents were living with parents or family.
- 100% of participants had at least their high school diploma/GED equivalent.
- 24% of the group had an advanced degree (the US average is 10.9%).
- 37% of those surveyed had a bachelor’s degree.
- 16% had a master’s degree.
- 4% had doctoral level degrees.
- 75% used private transportation as their primary means of transport.
- Only 2% used public transportation methods.
- 10% used special transit services.
- 11% drove a modified vehicle.
- 21 vehicles were paid for partially with vocational rehab funds.
- None of the 94 surveyed reported extreme dissatisfaction with their life.
- 66% of participants had a higher than average outlook.
- 85% believe that NMD made them “stronger on an emotional level.”
- Less than 25% of those surveyed work full-time.
- 50% were unemployed and 45% of those unemployed said it was because they were afraid of losing governmental assistance.
- 21% were self-employed.
- 11% receive 24/7 care.
- 31% reported needing 24/7 care.
- 31% pay for attendant care out-of-pocket.
- 82% of those surveyed use PCAs rather than skilled nurses.
- Only 66% knew what Consumer Directed Services were.
- 65% were single and not sexually active.
- 66% felt that NMD affected performance/confidence in the bedroom.
- 13 of the 33 in relationships were married.
- 13 reported parenting children.
- 39% of participants stated that their primary recreational activities were social media and going to the movies.
- 89% reported that their primary interaction with other NMDers occurs online.
- 70% of those surveyed made less than $25,000 per year.
- The majority surveyed (29%) lived in middle-class households that made a combined income of less than $75,000 annually.