Ghosts, Conundrums, and Dilemmas:

Disabled Adults

By Mickey Dunaway

This piece is not my typical blog post. No pictures. No humor. Just cold and sometimes hard facts.

However, I trust that you will spend a little more time with me and read the entire piece because I trust that you will perceive its difficult honesty.  The themes of this piece will frequently have my personal point of view as the essay looks toward my not-too-distant future.  

I welcome you to take this journey of whens and what-ifs with me. 

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The Ghosts

As we start, it is crucial to appreciate that data, not opinion, is the fuel of our craft. No political arguments permitted. Moreover, I promise no fancy statistics. 

As we begin and look down at the view from 15,000 feet (this is a fast machine!), you will see a small city of 25,000 people. This city is in any part of any state in the Union. Time for a few demographics about the city.

  • 3500 or 14% of the 25,000 population will have an identified disability (National Center for Educational Statistics). Not one or two percent—14 percent.
  • 24.7% or 865 people from our disability group are school age and receive services through their school, so they are not part of our study group.
  • That leaves 2635 adults or 75% with a disability of some kind for which our small city needs to plan. It is important to begin the plan, not the planning, immediately after they leave school. 

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Let us ease back and travel a bit farther to the view of a city of 250,000 people.  Still, not a big city, but that key 14% now equals 35,000 people witha disability. Removing the school-agers be served in school (8645), we are left with a whopping 26,355 adults in the population with identified disabilities.

What does society do with these disabled citizens—often capable of meaningful work with just a little support—as they age into adulthood.  That is a life-altering question that faces us today. Not tomorrow. Today. Life altering for the disabled and the non-disabled segments of society.

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At this point, I am adding in some actual data points about our group based on research from the Pew Research Center(https://www.pewresearch.org/fact-tank/2020/04/23/as-schools-shift-to-online-learning-amid-pandemic-heres-what-we-know-about-disabled-students-in-the-u-s/).

What kinds of disabilities are present in adults in the U.S. population?

  • 3% are significantly mentally disabled
  • 14% have significant health issues
  • 10% have autism
  • 5% have emotional problems 

Let us look deeper at our group (from either city). Assume that they have aged 12 years since leaving high school, and they are all around 30 years old and are a part of the 61 million adults in the U.S. with disabilities—that is that the one in four number I mentioned earlier.

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Since they have exited high school, society (that is us) has several important questions that we as citizens must ask of local, state, and federal governments on behalf of our disabled citizens.

  1. Do they live independently? Or do they still live at home?  
  2. Is supported living routinely available to them?
  3. Do they work? 
  4. If yes, how do they get to their jobs? 
  5. Is supported employment available?
  6. Do they have a social life like most other thirty-year-olds? 
  7. Do they have a spiritual life? 
  8. If yes, how do they get to their worship center?
  9. Do they know how to access medical services if needed? 

I am sorry to tell you that the answer to most of these questions is A Resounding NO.

Because of laws passed by Congress, there are often underutilized benefits available to the adult disabled. Unfortunately, however, those benefits are nominal, and the parents of many, if not most, disabled children neither know what those benefits are nor how to access them. This is through no fault of the parents. The information on rights of and services for the disabled is not easily accessible. It should be a major portion of every high school special education program. Sadly, it is not. It should be part of every physician’s services to disabled patients and parents. It is not. Every spiritual center should make this part of the institution’s mission. In the Christian world, it is part of Jesus’s assurance: if you have served the least of these you have served me (Matthew 25:40-45).

_____

Congress has provided help through Medicaid Section 1915(c). This law provides Home and Community-Based Services (HCBS) waivers designed to permit states to provide home and community-based services to people who need long-term care to participate in the community. This critical provision means the disabled can stay in their own home or a community setting (https://www.assistedliving.org/what-is-a-medicaid-waiver/). 

Unfortunately, those who could participate as full-citizens working and living with support must typically wait 5-7 years. Even if they qualify for the services that would allow them to be fully functioning citizens participating in our society, those services at the state level set up by the state and typically fails to serve large numbers of citizens based on how the state sets up the program.

So, what happens to them during that time they are waiting? I think you can probably guess by going back and looking at those questions. First, they likely remain at home without support dependent upon their parents, with independent living as an unachievable prospect.

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Now to end this discourse. Political affiliation is meaningless to this need of our society. The hard truth is that our country has not done what we should have done regardless of which party has been in power.  

Second, Religion has failed on a level equal to the government. Jesus in Matthew 25:40 said, “Whenever you did it for any of my people, no matter how unimportant they seemed, you did it for me.” (Contemporary English Version. https://biblehub.com/matthew/25-40.htm). 

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I am directly related to one of these folks that I have written about here and that Jesus spoke about—pure souls.  I observe that the nation has allowed the most unprotected of our people to move about us so unnoticed. They are ghostly figures when the truth is recognized, simply because we did not care enough as people to provide for them in a means to allow them to be productive citizens.

I am a parent of a disabled child born with cerebral palsy, with vision, physical, and intellectual disabilities who turns 44 this week. Let us call this child Mysecondbornson.  His older brother by four years—Myfirstbornson will turn 48 later this summer. Damn, but I am getting old! I will come back to that aspect of this story momentarily. 

Myfirstbornson was born with opposite traits from his brother. Breezed through school at every level, even high school, where I was his principal. Although, I am sure he still counts that as a disability. Bachelors and Master’s from Auburn and holds a Professional Engineer Certificate from the state of Alabama—kind of like the state boards for other professions.

Those are my children. As different as different can be. Does society, or did their mother and I owe more to one than the other? That is the conundrum of this story. I can find no moral, ethical, practical, or religious support for treating one differently than the other, but society does.

There is a phrase that society—schools, media, parents, citizens, churches—uses when talking about the tiny group of school children likely at the top of scholarship lists and GPA calculations. Prestigious universities compete for them. They are referred to as The Best and Brightest. 

I ask you, “How am I—a parent with a child in each category—to feel when I hear that phrase, Best and Brightest? Well, I feel royally pissed off every time I hear it because there is not a more destructive phrase used by society and our schoolsto refer to our children.  Dammit! I am pissed just writing about it. Won’t you help stop it—let folks know that phrase is too profane to use in polite company? 

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The Conundrums

The ever-present issue for my wife and me is the beginning of a paradox of unfathomable complexity—in part because we will only experience it once.   I taught schools from middle school through graduate school at one time or another, and never was the great question of how we prepare for our disabled son once we are gone to the great beyond.

We are doing our best to be prepared for our ultimate demise whenever it comes and in kind be prepared for my son’s future after our big events.

_____

Right this moment, I am now into my 74th year. I have a few aches and pains that come from living for seven-plus decades. However, with a twice-a-week visit to physical therapy I am remedying or at least diminishing most of those.

Truthfully, I look forward to an end-of-life as enjoyable life’s other seasons. But there is also a great conundrum facing our family and almost every family like us. How do we provide for a significantly disabled child when we shuffle off this mortal coil?

My mother lived to 92, and that is my goal as a minimum. That gives me another 18 years to get affairs in order for my wife and me and my two very different children. You see, Mysecondbornson lives just 15 minutes from us, and we help support his independence, but Myfirstbornson lives four and half hours away. Not a big trip these days, but in the days to come as we age, he might as well live on the moon. He has concerns about how he can give his parents support when we are four hours apart. Our conundrum is how we give Mysecondbornson the support he needs as he ages if we move closer to Myfirstbornson.  Mysecondbornson is in a unique situation getting the government support he needs to lead a life as an independent and productive citizen.

Myfirstbornson will be the executor of our estate and Mysecondbornson’s Special Needs Trust once my wife and I check-in to check out the Almighty’s sense of humor. However, if Myfirstbornson is four hours away, how does he reasonably give his brother the additional support he will need when we are gone since both brothers will hopefully be in their sixties.

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Dialemmas

Furthermore, thousands of families—many of whom may sit next to you at ballgames or in your church or synagogue—face similar challenges.

If you know of someone with a disabled family member, especially if the parents are in their seventh decade like us, do them the favor of asking if you can offer help by being a sounding board for their life’s greatest riddle. They—and the Almighty—will love you for it.

2 Comments »

  1. Good morning, Mickey,
    Your post today should be required reading for EVERY politician, educator, religious representative, and the members of the press, who could get the word out if they knew about raising a disabled child and preparing for the time when loving parents are gone. Whew, that’s a long sentence, but you get my drift. I am so glad you posted this. Please tell Sandy how proud I am of you. Love you still,
    Kaye

    Like

  2. You got my message perfectly. Of course, you always did. Bless you for that. You know, for all of Adam’s success through the years, If we have not provided for his success after we have gone, what have we done? And most importantly as you noted, we are far from being alone.
    Give my best to Farrar and boys.

    I love you so much my darlin’ friend.

    Like

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