“The Invisible Ones and their Guardians” – Opening Words from Sun. April 3 by Jim Jordan

April’s Guiding Principle and Theme is I am free to Question. My Contrarian opening words are about a group who cannot or have very little ability to do this.

Premises

  1. The pandemic has been hard on everyone, but has been disproportionally harder on certain segments of society.
  2. Medical Advances and Technology have allowed many, who would have died 10, 20 or 40 years ago, to live. But Societal and Cultural Criteria and Ethical considerations have not kept up with these advances to allow them to reach their full potential.
  3. Missouri’s current Government is a pro-birth state, not pro-life.
  4. Missouri emphasizes workforce readiness and often states you must work to receive social safety net benefits.

Statement – MO House of Representatives is taking a draconian approach in order to not spend money to support people’s ability to achieve a decent life and support their family. For example, Missouri House Republicans have not given up their quest to unravel the expansion of Medicaid that voters approved in 2020, passing a bill in February to institute work requirements and give lawmakers the power to decide from year to year whether to cover the new recipients.

But the senate has been able to push back and stop many of these bills (so far).

My opening words are entitled The Invisible Ones and their Guardians.

There are over 12,000 people, almost all adults, with developmental disabilities receiving financial support in Missouri. About 8,300 people receiving services are older, mildly disabled adults, living in residential facilities, with no family to support them. Many grew up in a time in which they were kept home and remained invisible. Some are disabled younger youth and adults that are able to live in group homes with support staff or whose families that cannot support them in their natural environment and who rely on the state to provide living arrangements in an institutional or group residential setting. Another entire Opening Words could address the disparities and this group faces.

I am going to focus on a more deeply hidden subset of the Invisible Ones—multiply disabled adults after they age out of school. This time is known as the Precipice. School is all about workforce readiness. I agree wholeheartedly, but what happens if an individual can never enter the workforce? The educational goals focus on personal life skills. In Missouri, these students can stay in school till 21. Most of the “out-of-school or agency” programs focus on? You guessed it—workforce. Earlier this week a WUSTL researcher reported 60% of disabled Missourians are not employed.

There are day programs to serve adults who cannot work. The emphasis for many is on our general construct of, “what is an adult?” Many multiply disabled individuals are adults chronologically only. I visited a number of these programs after Aidan jumped over the cliff. What I found was very discouraging—half or more of the individuals were asleep or unengaged in their chairs. Funds to hire staff that could provide an individualized approach were not available (most funds are allocated for workforce programs). Or the adult day programs are molded after what older adults enjoy doing. L’ARCH, a great program, fits this mold; and for years I hoped that they would take adults who are not adults, but kids in development. But they serve “disabled adults” and there are many for them to serve. Aidan has been on a waitlist for 8 years to enter a great program that thinks outside the box—St Louis ARC’s Community Engagement program. The pandemic opened up spots, but they were five staff short to support the 15 individuals they had in January. They want to serve 25. In mid-March, they hired one out of five staff. Aidan could be on the wait list for months until they hire enough staff. The federal and state government is not adequately funding programs to hire staff. So multiply disabled adults and their families are left in the lurch, stuck in an indeterminate void.

Many guardians have had to leave the workforce when our son or daughter “graduated.” Some were prepared financially to be able to do this, but for others, their income was spent on medical or other bills that made, and make the loss of income a real hardship. But there must be a safety net for this group?

Missouri provides financial support in the form of a Medicaid or other waivers that serve up to 1,600 individuals. Some of these individuals are higher functioning and can live in group residential settings and others require more support and must live with their family for reasons of safety, health, physical and social emotional well-being. I know parents who have tried group homes and because of inconsistent staffing, found it was not safe for their family member to live anywhere else but home. Many of these 1600 are individuals whose families still support them in their homes.

There are state and federal funds available to hire care providers to enrich the lives of these individuals. The pandemic resulted in more families with neurotypical children requiring care providers when school went virtual. With not enough state and federal funds allocated and the Pandemic’s Great Resignation, agencies have not been able to hire care providers for the disabled; and agencies caring for older adults are experiencing care providers leaving for more lucrative private-pay positions with upper middle-class families that can afford it. Parents cannot find and hire care providers for their disabled loved one (part time jobs paying $15-20/hour). The need and the dearth of options for care continues over two years later. It is much easier to work as a nanny than to support a disabled individual. I am part of a group of 180 parents in the St Louis area working to find and explore viable options for care and most of us have seen fewer, if any, university students wanting to work with disabled individuals, even when it has provided valuable experience to add to their resume. In the past I have had principals hiring new graduates for teaching positions tell me that the experience they gained being Aidan’s support person set them above the rest of the applicants.

The pandemic has disproportionately impacted the disabled young adult community in its ability to achieve a quality life that we all want for our children and loved ones with physical and developmental disabilities to have. An example of how the pandemic adversely impacted the multiply disabled—Many of these individuals are more susceptible to contracting COVID and developing life threatening symptoms than others their age. Aidan’s Physiatrist, medical doctor who have completed training in the specialty of Physical Medicine, skeletal, muscular, nervous systems and Rehabilitation, said Aidan looked better than any of her patients as most of them had spent the past two years in bed or sitting in chairs with very little physical activity, so they regressed and their muscles atrophied.

What is the upshot?
Parents are supporting their loved ones at home, up to 60 hours a week. Many, like me, are older and our bodies are breaking down, our quality of life and our lifespans are being compromised or shortened by the physical and emotional demands we face—all of which also negatively impact our families and our children’s quality of life. We see aspirations for a retirement we had hoped for, evaporate. So, you might ask, can’t parents at least tap into the state allocated money to alleviate some of this burden? Especially those parents who can’t find care providers and are now providing the care? Remember that often a parent had to “retire early!” If you do not use the money allocated each year it goes back to the state. Parents can get paid, but not if you are their guardian. And so, some parents are giving up guardianship in order to bring in necessary household income. This is a huge risk as they can no longer make medical, financial, legal, or other decisions. They hope nothing happens to the other parent/partner who holds guardianship.

There are other examples I could discuss, but I am sure I have exceeded my allotted time. So, in conclusion, next time you decide to advocate for those facing disparities and inequities in our society, remember those who you do not hear because they cannot advocate for themselves. Remember the Invisible Ones who deserve to live an enriched life to the best extent possible.

And regarding the Guardians, I will share a truth rarely spoke outside our inner circle. Our multiply disabled children are a negative energy drain when we become care providers most of the time and struggle to be parents. Finally for the guardians, I will quote a few lines from a powerful essay.

I see you sneak out of the conversation when all your friends boast about achievements and exam notes.

I see you sitting on the computer for hours investigating what your child needs.

I see you when you’re on the edge of the precipice struggling to live. I know you feel invisible, like no one notices. But I want you to know that I see you.

I want you to know it’s worth it. I want you to know that you are not alone. I want you to know that love is the most important thing, and that you are the best at it. Whatever day today… …you’re doing it right. And I see you.

I See You by Alethea Mshar
NOTE: The ideas and opinions in this post do not necessarily express the thoughts or opinions of the Ethical Society of St. Louis or its leadership.