Redefining Disability Challenge – Question 41

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the forty-first question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Free post day! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

I hate winter weather. I despise being cold. It causes physical pain when my feet get cold, and they are almost always cold from November to May each year. I dislike having to drive in snow with other drivers, most of whom never seem to remember to be cautious. I can’t move my arms if I have to wear bulky sweaters and jackets. Every movement requires more energy and takes more time.

My friends and family know I hate winter. I do my best not to complain. However, it is a safe bet I will put on a bright face in public yet privately curse the cold in my head for months on end. I spend far too much time and energy being miserable about something I cannot control – a behavior I routinely advise others to avoid.

Why do I stay in upstate New York where I am miserable due to weather for six months of the year? Wouldn’t it just make sense to move to a warmer climate?

I stay in New York for many reasons. My elderly parents live in New York, and I like being able to get to them within a couple of hours if needed. Most of my other family members live in New York, and they are part of the support network I rely on to live independently. But the main reason I continue to live in New York is because my disability requires me to use personal assistance to be independent, and New York has one of the best consumer directed personal assistance (CDPA) programs in the United States.

As I have mentioned in prior posts (you can find three of them here, here and here), I rely on the Personal Assistants I employ through CDPA to perform daily tasks most nondisabled people don’t think about. Each day, these dedicated women get me in and out of bed, help me on and off the toilet, assist me with showering and dressing, style my hair, prepare my food and clean my house.

If you required this level of assistance to meet your basic needs, and could not afford to pay for them out of pocket (private health insurance does not pay for long-term home care), you would want to live in a state with good services. I have decided to tolerate single-digit Fahrenheit temperatures and below-zero wind chills because I do not have $50,000 to spend on my personal care each year and I want to have control over how and when I receive my care.

In the United States, most people who require long-term home care rely on Medicaid to pay for care. Some states do not offer self-directed services to Medicaid recipients. Some states have waiting lists for home care, forcing people to remain in institutions. Some states limit the number of hours or care a person can receive. Most states limit the amount of income a person can earn and still remain eligible for CDPA through Medicaid.

New York has a comparatively generous Medicaid Buy-In Program for Working People with Disabilities. As a single person, I can earn almost $60,000/year and still remain eligible for CDPA. There are very few states which permit that level of income while retaining services.

I am not saying New York is the best state in the nation. There are many reasons to want to leave. But when it comes to how I live my life, there are many reasons I stay.

Even if it means another day of freezing cold. Spring is only three months away. I can make it.

Unless I win the Powerball tonight. Then all bets are off because the meteorologist just said it is 6° Fahrenheit this morning and I’m cold.



9 thoughts on “Redefining Disability Challenge – Question 41

  1. Wow. I’ve never thought about what it must be like to have to consider all of these things (beyond family connections) in making the decision of where to live. Great post. You always leave me thinking.


  2. I always hate hearing people say things like, “If you don’t like it here, why don’t you move?” or “If you don’t like your job, get a new one.”
    Sometimes it’s not as simple as that.
    Stay warm, or as warm as possible. I feel pain in 30 degree weather. I can’t imagine being in a very cold area.


    • I often advise people to stop wasting energy on things beyond their control, and for the most part I think I fairly well with that myself. But, when it comes to weather, I just can’t seem to stop complaining.

      There are many reasons why people stay, make decisions we don’t agree with, leave, etc. I’m doing my best to stay warm. The temperatures are at least closer to the freezing mark, instead of arctic!

      Liked by 1 person

  3. Well I didn’t know what 6 degrees Fahrenheit was but Mr Google helped me to translate it into minus 14 degrees Centigrade. I have never experienced such cold. At plus 3 or 4 degrees Centigrade I moan inwardly (if not loudly to others) about how cold I feel. After I read your post I guess I have much to be grateful for. But like you, I think in terms of its only x months to go and I can manage that when I am suffering out winter cold (which of course is a mild mannered thing compared to New York’s big chill.


    • Thankfully, it has warmed up a bit. It is closer to freezing now (32 F/0 C). I know there are other areas of the country faxing worse, and getting pounded with snow. I’m still counting the days. We are almost half way through January!


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