To Political Candidates on the Topic of Disability Rights- Do Better

Last night I attended a political event where candidates running for state office in Tennessee could speak about their platform and answer questions from their constituents. During the planning stages of the event, I was selected to ask a question about disability rights to the two Democratic gubernatorial candidates who would be in attendance- Karl Dean and Craig Fitzhugh. I thought carefully about what I might ask them and decided to lob them what I thought would be a softball question with a big playing field. I knew other people would be asking about health care, so I wanted to steer them in a different direction regarding disability. As I was introduced, I approached the microphone, rehearsing the statistics I wanted to share in my head. "Almost 1 million people in Tennessee are living with a disability. About half of those individuals can and want to work, yet only 27% are in the labor force. And the ones who are in the labor force only make about 72% of the median income. As governor, what will you do to improve the educational and economic opportunities for people living with a disability in Tennessee?".

It's a big, hard question, but one that should be easy to give a two-minute broad response to if you've thought about disability issues at all. I opened the door for them to talk about education or jobs or legislation. They could have talked about inclusion. They could have told a story about somebody they know who is disabled. They could have talked about legislative measures they've helped pass or would like to see passed. They could have talked about a program in our state that is doing great work for and with disabled people. They could have committed to working with disability rights activists and continuing to learn about the many issues that people with disabilities face in our state. But that's not what they did.

Instead, the fumbled over non-answers struggling to even form coherent sentences. Almost 15% of their constituents have a disability and yet neither candidate had a single meaningful talking point about disability rights. Karl Dean has been the Mayor of Nashville for over 10 years and Craig Fitzhugh has served in Tennessee's House of Representatives for 24 years. I have a hard time believing that neither of these men have been confronted with issues facing disabled Tennesseans and yet they had nothing meaningful to say about how they will advocate for those individuals and families. Assuming they have heard about these issues, their lackluster answers tell me that they just don't care all that much. Even worse, they knew that somebody was going to ask them about disability rights because they received a list of question topics before the event, and they still failed to provide an adequate response.  

I have a lot of grace for political candidates. What a strange thing campaigning is and they are expected to be knowledgeable about so many issues. It's just not possible to have an intimate and thorough knowledge about all of the issues. I would have been so impressed had either candidate said "I'm embarrassed to say that I don't know a lot about disability issues in our state, but I am committed to learn and to surround myself with disability rights advocates and experts who can help guide me on these issues". I would have had a lot of respect had either candidate approached me after the event to say "You know, I'm not really satisfied with how I answered your question". But again, that's not what they did. They left me with their bumbling, confusing, and buzzword filled responses.

I will be writing personal letters to both Mr. Dean and Mr. Fitzhugh, urging them to do better in this area and giving them some actionable ideas, but I also wanted to make a statement to all political candidates. Even though disability rights is not a "hot topic" for a campaign, it's an incredibly important moral and economic issue that candidates need to have a nuanced understanding of. It's a civil rights issue that touches every area of our political and social life and if you don't have a single coherent talking point about disability issues, it's because you aren't paying attention. 

Here are some actionable items for you to consider and to learn more about (portions of this list are adapted from Karin Willison's article entitled "Why Disability Representation In Politics Matters More than Ever"): 

  • Pass important laws like the Disability Integration Act to guarantee and improve in-home care services that empower people to live independently
    • Change laws that favor nursing homes over independent living, and ensure a skilled workforce by guaranteeing high wages for home care workers.
  • Expand the ABLE Act, so it is open to all people with disabilities and allows people to save more money each year for important expenses, without risking their benefits.
  • Fight for jobs for people with disabilities; a group whose unemployment rate is far worse than other groups
  • Fight for educational opportunities, not only in the public school system but also in higher education, and advocate for and legislate inclusive classroom settings
    • Equip teachers to work with disabled children, provide school counselors and other resources in every school, and pay these professionals an appropriate wage
  • Fund programs that train employers and educators about inclusion and accessibility and accomodations
  • Reform “work incentives” that are supposed to help people with disabilities to work and still receive essential health benefits like Medicare and in-home care, but actually make being employed overly complicated
  • Add to and enforce the ADA , ensuring that all spaces are accessible
  • Create more affordable and accessible housing options, so people with disabilities can find a place to live and older adults can remain in their homes as they age
  • Invest in medical technologies and scientific research
  • Ensure health care and medical technologies are accessible and affordable for people with disabilities
  • Reform our justice system, where people with developmental and mental health disabilities are disproportionately harmed
  • Recognize that many people with disabilities also belong to other marginalized groups and that their struggle is specific to their intersecting identities

See how easy it was to come up with not just one, but thirteen, actionable talking points about disability rights? And that's just barely scratching the surface and took very little effort on my part to generate. Not having a single meaningful actionable talking point is not okay. Disabled constituents are just as important and valuable as every other constituent and politicians and political candidates have a duty and a moral obligation to answer to the many issues facing this community. I won't stand by and accept messy answers and inaction. I won't give candidates a pass for not knowing about this critical body of legislative work to be done. I won't sit down and be quiet and accept their non-answers. I will continue to demand better and to hold them accountable. Political candidates, do better. 

The Very Basics of Accessibility & Inclusion

Let's have a super introductory chat about accessibility & inclusion. Accessibility is about making sure that people who have a disability have access to all of the same spaces, experiences, etc that an "able person" does either with or without assistive technology/accomodations. Often, when we think about accessibility, the first thing we think about is physical access. For example, can a person with a wheelchair navigate an entrance to a building? While access is definitely important, I'd argue that it's a meaningless endeavor if spaces are not also inclusive and if we aren't thinking about access to its fullest extent. When spaces are inclusive, the people in them have everything they need to fully participate. 

Sticking with the idea of navigating a space with a wheelchair...let's imagine a store that has a wheelchair ramp, handicap accessible restrooms/parking, and all of the spaces are wide enough to navigate with a wheelchair. Physically (and technically) this space could be labeled as accessible. A person in a wheelchair would be able to get in the door and participate on some level. However, if the doors are heavy and cannot be operated electronically, if the tables/counters/spaces to check out are not at the appropriate height for navigating them in a wheelchair, if there is equipment in the aisles, if there is a second level but no elevator, etc...this space is not inclusive and it's barely accessible. The person is not able to fully participate in this space because they do not have the same access as an able bodied person.

The issues of accessibility and inclusion play out differently depending on the disability and the individual, but our culture does the bare minimum of making spaces and experiences accessible and inclusive. We rarely think about issues of access and inclusion until we are personally affected, but failing to do so excludes people living with a disability. A failure to act is an act all its own. I hope for a world where everyone is thinking about how we can be more inclusive so that people with disabilities are not constantly burdened with having to advocate for themselves or create their own accommodations. That is an emotional and mental burden that we can share in.

Here are a few very simple things you can do right now to work towards a more inclusive world: 

  • Learn more about accessibility and inclusion
  • Seek out and really deeply listen to the experiences of people living with a disability who have struggled with access and inclusion
    • One simple way to do this is to follow people living with disabilities and disability rights activists on social media- I recommend following @annieelainey & @lollardfish on Twitter as a starting point. PS- if you didn't know this, Twitter is a particularly inclusive and accessible platform compared to other forms of social media. 
  • Learn more about particular disabilities and consider the challenges you might face in navigating the world and the places you go every single day with that disability. Then think about how we can reduce those barriers. 
  • When you are in a physical space or participating in an activity, intentionally pause and ask yourself if it's truly accessible and inclusive
  • Intentionally connect to the disability community- chances are you know somebody who is living with a disability (even if you don't know they have a disability), but even if you don't- volunteer at an organization that serves people with disabilities, attend a disability related conference or event...intentionally seek out opportunities to connect. 
  • When you notice issues of inclusion and accessibility, speak out. Raise awareness, get others thinking about the same issues. The more people thinking about these things, the better and the more likely they are to change.
  • Ask questions. You don't know what you don't know and there should be zero shame associated with attempts to learn. We live in an age where information is readily available all around us. Ask questions, read books, seek answers. 
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Estate Planning with a Special Needs Child

My husband and I recently went through the process of having a will (and other end of life documents) drawn up by an attorney. It was a hard, enlightening, and empowering process that you can read about on my personal blog if you feel so inclined. Since then, I've gotten several questions from parents who have a child with special needs or from service providers who work with people who have a disability asking about how this process works, so I wanted to share some of the most basic details here. 

Thinking about what would happen to our son in the event of the unthinkable was always something that weighed heavy on my mind. It would literally keep me up at night sometimes. We knew there were people who loved him unconditionally and that they would look out for him, but I worried about whether they would have everything they needed to help him transition and eventually to thrive. After talking about it for a couple of years, I asked one of the social workers at our local autism center if she knew any attorneys who helped with estate planning for families like ours. She gave us the information for a local attorney who specializes in estate planning when there are children with special needs involved. An attorney who deals with estate planning in general may be able to facilitate this process without issue, but it was nice to work with somebody familiar with disability law because she thought about our son's lifespan and all the potential legal issues that may present themselves because of his disability.  

Many people traditionally set up their wills to leave their assets to a trust meant to benefit their children. Basically this puts an adult (or multiple adults) in charge of the resources until the child turns 18 and ensures that whatever assets you have are used to benefit the child. The person who oversees the trust is know as a trustee and you get to decide who that person is. It can also be somebody entirely different than the person who will take over guardianship if you feel like it's important to have multiple parties involved. The benefit of having a trust in place is that you are ensuring that your assets can only be used for certain purposes and only to benefit the child. Your greedy brother in law can't use your life insurance payout to go buy a boat. Hopefully you don't have a greedy brother in law, but people do weird things when they are grieving. 

The difference in special needs estate planning is that there is a special needs trust established rather than a traditional trust. This sort of trust basically ensures that no matter how much you leave your children, that it will not impact their eligibility for income-based government programs like SSI, Medicaid, etc. This is so incredibly important for disabled people- just because they inherit money does not mean that they should lose access to critical services. And even if you're thinking "well, I'm not rich, I'm not going to leave them that much", we all know that it doesn't take significant income to make you ineligible for these life-saving programs. It's better to 1. ensure that whatever you have goes towards their care and 2. protect your children from losing their benefits. By the way, if anyone else in your child's life plans to leave them an inheritance, in the absence of a special needs trust these gifts could also impact their eligibility for services. As long as you are alive, you are the trustee so if you have a loved one that leaves money to your child, you will be able to access it through the trust at any time. And if you're thinking "but my child doesn't receive any of those services", I'd just caution you to recognize that one day they may need access to those resources even if they don't need them know.  

Here are some things to think about as you approach the estate planning process: 

  • It's important to work with an attorney who is familiar with special needs estate planning. They will think about things and plan for things that an attorney without this experience may not and they will help you update the information and think about other legal considerations as your child ages. For instance, just before your child turns 18 you may need to consider a conservatorship or other legal means for protecting your child's assets. An attorney experienced in this field will help you stay on top of these special considerations. 
    • I would recommend contacting local social service agencies that work with people who have disabilities to find out if they know attorneys in your area who specialize in this. When you do finally contact an attorney, ask them about their experience in special needs estate planning and don't hesitate to walk away if you are not comfortable with their answers. This process is too important to do half-way or to do incorrectly. 
  • Try not to have sticker shock. Our attorney estimated that this initial process would cost us about $2,500 (perhaps a bit lower). I'm still waiting on our final bill but I was initially taken aback by the cost. Given our age, she currently recommends we update it every 5 years (or sooner if needed) which will be a much less significant cost. 
    • I realize this presents a barrier for lots of people. In my mind, it was worth taking the money out of savings because it will ensure that our loved ones have immediate access to everything they need to care for our son and that there will be zero confusion about our wishes. Based on everything I've heard, it is far far far more expensive for your loved ones to try to sort this stuff out after your death than if you have it all done in advance. The last thing I wanted was for our loved ones to be stuck with a hefty bill or for the resources that were meant to help sustain or son to be spent on legal fees. If you can afford it or save up for it, I'd argue it's worth the expense. 
  • Realize that it's about more than the assets. While money and property are often the focus of end of life planning, so is the human part. Our attorney helped us pull together a ton of information about our son's daily routine, needs, service providers, etc. It's information that will be incredibly helpful should somebody need it. It also forced us to have some hard, but good, conversations with our loved ones about the role they can play in our son's life in the event of our death. Nobody should have to guess about your wishes and I hated the idea of our loved ones trying to figure out who should be responsible for our son in the midst of their grief. Finally, it was peace of mind for me. I am confident now that our son will be well cared for and that our loved ones will have access to everything they need to help him thrive. And that's a gift in and of itself. 

Feel free to reach out with specific questions you have about this process. I plan to follow this article up with other, more detailed information, but hopefully this gives you a place to start and some important things to consider as you begin this process.

 

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