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  • It Shouldn’t Be This Hard

    Posted by deann-r on October 6, 2022 at 9:00 am

    As someone with a disability who doesn’t drive, I depend on transportation services to get to medical appointments. My limited income qualifies me for STS (Special Transportation Services.) That’s all well and good if any transportation companies accepted it along with MA. Last week, I tried lining up transportation for my annual neurology appointment and assessments, but to no avail.

    Two big factors are coming into play. Lack of drivers for one. Second, low reimbursement rates. Every company I called, six in total, basically told me good luck with that. Fortunately, with advanced notice, a family friend can rearrange her schedule and take me with Mom’s van.

    It shouldn’t be this hard. If I didn’t have the ability to find alternatives, I’d be canceling my appointment and possibly discontinuing treatment. Instead, I burden those around me because I know how important keeping up treatment is for me.

    Have you had issues with transportation? Any bright ideas or suggestions to make it easier?

    deann-r replied 1 year, 1 month ago 4 Members · 6 Replies
  • 6 Replies
  • eric-ovelgone

    October 6, 2022 at 2:35 pm

    Two of the biggest obstacles everyone I know in the SMA community deal with is always 1) attendant care and 2)transportation. I am fortunate my dad is still capable of driving, but I wonder for how much longer . Public transportation services won’t cross county lines, are incredibly unreliable and often give pick-up – drop off times plus or minus two hours from scheduled time. If you don’t sit there waiting for them, they will leave you stranded. When they actually show, it is a lucky day. You are likely just one of ten people on their route and inevitably you will be stuck waiting for ride to drop off and pick up ten people before get dropped off even if pass by place you want to go a dozen times. Is no funding for wheelchair vehicles to speak of, and the vehicle manufactures for wheelchair vans, they must all think wheelchair users got multi-million dollar settlement for accidents because vehicles start at sixty grand new and go up from there. Affordable low speed specialty vehicles the disabled can actually drive themselves remain a pipe dream only available in foreign countries with provisions for light weight vehicles .

    • deann-r

      October 9, 2022 at 12:21 pm

      Yes, public transportation is so unreliable. Don’t get me wrong I’m grateful to have it, but it’s so stressful wondering if you’ll get from point a to point b.

      Cost is very prohibitive where acquiring a vehicle is concerned. Sometimes there are programs that will assist with it, but it’s no guarantee.

      Thanks for chiming in. The struggle bus is real.

  • alyssa-silva

    October 8, 2022 at 8:54 pm

    I don’t have any transportation issues at the moment as my parents or caregivers drive my wheelchair-accessible van. But I run into this issue a lot when traveling. I wish I had advice for you, but it sounds like you did all the right things. *Sigh* Sorry to hear you had all this added stress to deal with.

    • deann-r

      October 9, 2022 at 12:23 pm

      Yet another reason I shy away from traveling.

  • susana-m

    October 9, 2022 at 2:05 pm

    I feel pretty fortunate to be in Miami where STS has been operating for over 30 years. Each county accepts bids from transportation companies who manage the day to day operations. It’s got its limitations like scheduling in advance, problematic (sometimes nonexistent) accountability, range, and the likelihood you’ll detour to pick up other passengers. Considering how many ways those fluid circumstances can go wrong, they’ve been fairly reliable. They’re not limited to healthcare transportation or to financial qualifications so school, work and socializing is accessible.

    But you’re right,

    it shouldn’t be this hard.

    It shouldn’t be this expensive.

    For a group that has historically lived on or close to the poverty level, the cost of living’s astronomical

    • deann-r

      October 10, 2022 at 11:00 am

      Thanks for sharing. I live in a more rural area and I think that’s part of the issue. The transportation companies don’t want to waste their resources on an extended trip. It’s frustrating. I’m glad you find it easier in a more populated area.

      I don’t think people realize the added expense a disability brings to the table. From the big things like accessible vehicles to little things like paper towels. It’s ridiculous.