Caring for a Disabled Family Member

Nearly one in five people in the United States claim a disability according to U.S. Census data in 2010. Other data from 2015 at Cornell University shows the levels to be 12.6% throughout the States. With those levels, I figured some other readers out there would benefit from the thoughts I had about caring for disabled family members in the future.

Both my wife and I have brothers with disabilities. They currently live with our respective parents, but a phone call from my uncle the other day got me thinking about the responsibilities we have as parents and our other roles in our families.

Entering middle age comes with some new financial responsibilities. A lot of us with children in elementary through college worry about teaching our kids sound financial principles.

A lot of our parents are starting to age and some of them are needing help with financial and long-term care strategies. At this time in our life, parents need to get some expertise in helping our children get into adulthood without committing some financially devastating mistakes. We also need to help our parents prepare for higher medical cost, work slow down or retirement and potentially stepping up to assume some of the responsibilities our own parents have had throughout their lives. This could include caring for disabled or handicapped siblings and other family members. 

A Bit of History

I have two brothers and my wife also has a brother that still live at home. They all suffered some complications at birth and have neurological disabilities that limit their potential to hold certain jobs and take care of themselves. Because of their disabilities, they are eligible for government subsidies and decreased medical cost. Our parents have handled these things and my wife and I had only a hint of the understanding of the problems that both of our parents have solved throughout their lives.

My uncle called me the other day and wanted to discuss some estate planning. We have superficially discussed these things in the past since he and I are fortunate enough to have more income at our disposal than the rest of our family members. He was going over his will and wanted to discuss what should happen to my two brothers if my mom isn’t able to care for them.

To my embarrassment, I really hadn’t given this much thought before the conversation. I guess I figured they could always come and live with me and my family if something like that happened, but as we talked, I realized I should have given this more of a priority.

There are a few things I wanted to discuss and encourage all of you to consider. We may have financial responsibilities that will take place after our own parents pass away.  New financial and family responsibilities may emerge.

 

Government Programs

If you are planning for financial independence and retirement, don’t forget to account for family responsibilities. In our case, there is no one else to care for my brothers when my parents are gone. It’s either me or nothing.

I’ve heard of other situations where one sibling cares for an elderly parent and then something happens to the sibling. The other son or daughter has to assume responsibility. Families go through seasons of different caretaker roles.

We read lots of great plans all over the internet where people are achieving financial independence. I suspect a lot of us don’t have such cut and dry retirement plans. When it comes to the care of our extended families, especially those with disabilities, retirement plans can get a little muddy.

I’m trying to account for contingencies once other circumstances come in the future. Just like we buy disability insurance, life insurance, and put aside money for retirement, we might need to account for our other loved ones that aren’t our financial responsibility at the current time.

So what do we need to make sure happens before something unexpected puts a chink in our retirement plans armor?

 

Medical Care

Many disabled people have access to medical insurance and programs that other people don’t have, especially high earners. In my brother’s situation, he is eligible for Medicare. This is a huge help for my mother and affording his medications, lab work, and other tests.

I haven’t ever dealt with the system personally, but having at least a small understanding of the program and what he gets is important to me. During the conversation with my mom, she was able to give me the overview of how she works with the program and for what it pays. At least I won’t be completely in the dark when I need to step in and assist with his care.

 

SSDI (Social Security Disability Insurance)

This is another program that your disabled relative could be receiving. In my brother’s case, he gets a small check each month. It isn’t enough for someone to live on by himself, but it helps my mom make ends meet.

If he came to live with me, I don’t know if it would honestly be worth the hassle. The small amount that he receives might not be significant, depending on my retirement account values. 

At least I know he gets it. I suspect the added benefit won’t be worth the trouble. I’m not looking forward to periodically submitting income statements for my brother and dealing with the social security office. 

It is a nice insurance policy and overall I’m happy that as a society we use our wealth to care for people that can’t care for themselves. Just like any government program, I’m sure there are people gaming the system. I would do my best to care for him without the help, but having a basic understanding of the system could be helpful for the future.

 

Get Wills in Order

In my case, The main parts of my family consist of my mom, brothers, my own immediate family and my aunt and uncle. It was good to have a nice discussion with my uncle about his wishes if something happened to him or my aunt. My uncle made sure that I understood his plan and how to get the plan started if it ever became necessary. I also told him our plan if something ever happened to Mrs. HIP or me.

Then, I called my mom, just so I knew she was on the same page. It turns out that all of us have the appropriate wills drawn up. We are ready to go if the worst happens. They aren’t pleasant discussions, but everyone involved now has the peace of mind that we know what each other want if we aren’t around to tell someone.

 

Things will Change

My brothers have a routine. My wife’s brother has a routine. The routine is good for them. A lot of disabled people need that routine for comfort and to avoid other problems. Thinking about that and the disruption that occurs with a change in caregivers can help you cope when the time actually comes. I’ve thought of some plans, like identifying the items he values most and trying to recreate that if and when he comes to live will us. 

I read stories like this one and cringe. I really feel for the family described. The parents didn’t do a great job of caring for and encouraging the disabled sister. Then the disruption was even worse when she went to live with her sibling in an already difficult situation.

 

Housing Arrangements

Depending on the disability, some structural changes may need to be changed when your relative comes. If you would like to prepare ahead for your own needs as you age, and your disabled family member, you should make the structural changes to widen doorways, make alternatives to stairways and better access to bathrooms and showers. 

There are plenty of guides to assist in ADA remodeling. You can check out the example here.

 

Long Term Care

Most recommendations for long-term care insurance say to not even think about buying it until you are in your fifties. As a high earner, I plan to self-fund when and if that time comes. My brother could still be eligible for government-sponsored care, but those facilities are usually more bare-bones.

At least looking into the way long term care insurance works and how you become eligible for it could benefit your disabled relative. Policy premiums will increase the price as the covered individual ages. Certain criteria must be met once the covered person is eligible. Usually, that involves not being able to carry out two or more of the six activities of daily living.

  • Bathing
  • Eating
  • Transferring
  • Continence
  • Toileting
  • Dressing

 

I know this topic isn’t something that we like to think about, but with the prevalence of disabilities around us, chances are this topic will affect you personally or someone you love. Even if you are fortunate enough to not deal with disability in your immediate family, you could encourage your friends or extended family to look into the long-term care requirements if they have a disabled or handicapped family member. If you are prepared for the financial changes, that will make the difficult transition a bit smoother.

Have you talked with your family about disability care? Has there been anything in your own situation that has helped you cope with the responsibility you currently have or may have in the future?

 

Tom
Tom is a doctor, husband and father of five with a passion for parenting and finance. When he isn't skateboarding, riding BMX, or jumping on the trampoline with his kids, he is reading and writing about personal finance. He helps high income parents educate and mentor their kids to become financially, emotionally, and intellectually self sufficient.

9 Responses to “Caring for a Disabled Family Member

  • We suddenly realized recently how old our parents are getting (mid-60’s now) and have just started thinking about making accommodations and plans if we needed them to live with us in the future. I have several sisters and a brother that could help with my parents, but we would be the only ones to care for my in-laws. Some great tips and things to think about here!

    • Thankfully my parents are still doing alright, but I’ve seen them have to make some changes as they’ve dealt with my grandparents in the previous couple decade. I’ve made an effort to know what my own parents want and their expectations as they age.
      I’m glad you are thinking about this MYMM. Thanks for stopping by.

      Tom @ HIP

  • Great post, and and important topic. One of my nephews is on the autism spectrum disorder; he is still young and it remains to be seen how things will turn out, but it is almost certain he will not be able to live on his own as a fully functioning adult.

    His parents have considered the recently formed 529 Able accounts (529A), which allow savings similar to a traditional 529, but can be utilized for expenses related to a child’s disability.

    From my understanding, if the 529A balance exceeds $100k, the beneficiary will no longer be eligible for SSDI, so that needs to be considered on a case by case basis. But it gives another option for parents who worry about taking care of adult children once they are no longer able to.

    Take care,
    Dr. C

    • Excellent tips Dr. C! That is a great topic to discuss on its own. As higher earners, ABLE 529 plans could definitely reduce the tax load to care for our families.

      Tom @ HIP

  • This topic really hits home for our family. Thank you! We have 28 year old daughter who will be with us for all of our lives. Her lack of decision making ability prevent her from driving or holding a job. While we are able to financially provide for her I do have one major concern. How can she qualify for Medicare some day if she doesn’t earn the 40 credits?

    • As I read the laws, if she doesn’t qualify for social security, she isn’t eligible for medicare. If she qualifies for SSI (SUPPLEMENTAL SECURITY INCOME) then she could be eligible for medicaid. Depending on what you are able to leave her as an inheritance, you could set up a trust to fund health insurance for her, but I have no idea how much that may cost 40, 50, 60 years from now.
      You definitely have some tough decisions and I applaud you for being able to car for her now. As time goes on and health insurance laws change, you could look into Medicaid eligibility and the cost of a healthcare.org policy based on her assets. That could be affordable.

      • Thanks Tom for the reply. I learned at http://www.aarp.org/health/medicare-insurance/info-04-2008/ask_ms__medicare_9.html that she should be able to get medicare but will have to pay the premium for part A that most don’t, which runs around $450 monthly. This is on top of part B and a supplement.
        So, it comes down to either getting her legally designated as disabled or pay the extra costs. Not sure on this. This will require some prayer and conversations with my wife.
        Am I correct in assuming that those on Medicaid have great limitations on which doctors they can see?
        Currently, I have a large amount in a Roth that I plan on leaving to her, which she can take out over her lifetime. Since it is such a long time horizon, 60 years or so, I have it 100% in stock index funds.
        Thanks again for the post.

        • Yeah Mark,
          I saw that article too and that could be an alternative but who knows what the premiums will be in 37 years?
          My experience in medicine is Medicaid is inferior to Medicare. There are a lot of doctors that take Medicare and not Medicaid. Most likely she would be limited in the doctors and facilities she could use.
          I would think the Roth is a great plan for her as long as you don’t need it for retirement.
          I don’t know how feasible it would be for you to start a business and that she could actually contribute real work to your business, earn a wage and then she could earn her 40 quarters with a much more understanding employer. Obviously it has to be legitimate work.
          That may be more work than just saving enough and having a withdrawal plan for her in her 60s and beyond.
          I’m just brainstorming a bit here but I admire you for the plans you have in place so far. The fact that you are already planning for her is much more that a lot of our disabled and handicapped relatives have. If I think of anything else I’ll reply to the comments.

          Tom @ HIP

          • Thank you Dr. Tom for all the good information. i do not need the Roth so it will work perfectly for her income stream.
            I was discussing this issue with my wife and we reviewed all the options and I think you nailed it for the best choice for us. We would like her to earn at least 2 credits a year over the next 20 years, which is making at least $2600 in 2017. We are working on some ideas to make this happen. Thanks again.
            Sincerely,
            Mark

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