What exhausts you?
Work? Family? Politics? The news?
All these things can be exhausting. The thing that exhausts me and has for the last 35 years is disability. I just wanted to have a child. I just wanted to grow my family and live a simple life. That is what many of us wanted when we made the choice to become parents.
My journey of exhaustion started when my now 36-year-old son was about 9 months old. His pediatrician saw that he was not meeting the normal milestones that babies meet in their first year of life. And so, it began with more doctor visits to specialists and hospitals and tests to see what was causing his delays. My husband and I had to watch our scared little boy suffer through all of this. We had to help hold him down for blood draws and IVs to inject sedatives for CT scans. We had to hear his cries as all these strangers invaded his space to help him. It was mentally exhausting.
It did not stop there. He was misdiagnosed with A-typical Mild Cerebral Palsy. In the coming years I realized he was not displaying the signs of CP, but more the signs of Autism. In the late 1980s and early 1990s, not a lot was known about Autism. We sought more doctors who did more tests, which finally ended up with an Autism diagnosis.
During that same period, other battles began. I learned that Josh would need to start Special Education preschool at age three. Along with that came classes to learn about laws that had been passed to support the education of children with disabilities. The Americans with Disabilities Act (ADA), and The Individuals with Disabilities Education Act (IDEA) had been passed prior to our son’s birth. I thank God for that! Classes were being taught locally to help me understand these laws and other things I would need to do for Joshua to make sure his rights were not infringed upon and to make sure the school district was providing every support he needs for his education and his ability to be educated.
My teachers were people whose disabled children had already been through this process. They knew how to advocate because they had done it and were still doing it. They knew all the obstacles I would face because they had already stood up against them. They knew the funding would be heavily guarded at the schools because there we so many students who needed it and more students to come and not enough money in their budgets to pay for everything every student needed. After completing these classes I was terrified that I could not be a great mom for my son. My husband and I did it together. He was more assertive than I was, so I told him what Josh needed and he came to the meetings at the school and got them to agree. Learning about our son’s rights was truly helpful to our family. I will forever be grateful to my teachers! All the people we worked with and sometimes battled at the school district were and are good people who wanted the best for all their students. I am grateful to them for helping us, as well. This advocacy went on throughout Joshua’s education until he aged out of school at twenty-two. I grew so weary of it by the time he reached 20 years of age, that I stopped advocating during his last year of school and just gave in when they wanted to take therapies away from him. It is not something parents of disabled children must do once; we must do it every year for every service they try to take away. Plus, we have a financial burden of paying for extra therapies outside of the school district to help our children achieve their highest potential.
When people with disabilities age out of school, the battle for adult services begins. On top of that struggle, if your adult child has a severe disability or behaviors that are more challenging than most, you have a harder time getting service they need. No one wants to “deal with” our adult children’s issues. Some are aggressive, or have mental illness on top of their disability, or don’t understand personal boundaries, or poop their pants. Just like with the school districts, there is never enough money in the budget to pay for everything needed, including living wages for support workers in group homes and institutions. There isn’t even enough money in each state budget to get adults with disabilities into group homes or community-based services and they stay on waiting lists for these services for many years. Some only get off the list because their parents die or become too disabled themselves to keep caring for their children. They get off the list due to crisis and possible homelessness. This is the worry of every parent with disabled adult children. Every day of our lives, this is our main worry. What will happen to my child when I die?
This is a housing crisis, a staffing crisis, and a budget crisis in every state in this country! It’s been at crisis level for YEARS.
As parents, we exhaust ourselves by learning, planning, and advocating with emails and phone calls to our representatives in Congress. We save as much money as we can. We try to figure out who can be there for my child. Who is willing to be there for my child? Unless you live with this worry, you can’t truly understand it. That is why I am desperate to explain it to you.
We learn about Medicaid and Medicaid Waivers enacted by Congress to help our children.
Every four years a new election takes place, and our families are traumatized by proposed cuts to services we rely on. We advocate again, and again, and again, every time our adult children’s lifelines are under fire. We must defend these programs and funding from the very party who started them. It makes no sense.
IT.
IS.
EXHAUSTING!
Now, I spend my “free time” learning about various housing arrangements for people with disabilities and how to fund them. Since January 20, 2025, I am wondering if it is futile for me to continue this endeavor to create a place where he will be safe and happy after I am gone. Will these programs still be here for him? Am I wasting my time? Have all my efforts been in vain? I did not choose for my son to be born with a lifelong disability or to be a burden on society. If I were wealthy – and I know I can speak for other families when I say this – I would not have to advocate this hard, all the time, for welfare. We don’t want to be on welfare. None of us do. We don’t want our kids to be on it.
WE HAVE NO CHOICE. WE ARE NOT ABUSING THE SYSTEM. WE ARE TRYING TO HELP OUR ADULT CHILDREN SURVIVE LIFE WITHOUT US ONE DAY.
WHAT ARE TAXES SUPPOSED TO BE USED FOR IF NOT THIS?
Are there abuses and fraud? Yes! But it’s not being done by our families or the people who work at Medicaid or the people who oversee Medicaid. It happens when unscrupulous doctors and pharmacists bill Medicaid for servers they have not rendered. These doctors and pharmacists are not the ones who suffer when cuts are made to Medicaid.
Are there single moms and dads who have boy/girlfriends living with them they don’t tell Medicaid about? Yes. This abuse is a tiny fraction of what Medicaid pays out for services to people who have no choice but to be on it. Some of those single moms or dads have at least one disabled child who truly needs Medicaid.
I could talk to you about the laws Congress makes and the procedures for changing those laws and how things that are happening now by this administration are illegal, but many of you won’t believe me. I’ll post links so you can see for yourself.
Medicaid Waivers save millions of tax dollars by keeping adults with disabilities in their communities and out of institutions. Ronald Reagan was a great supporter of Medicaid Waivers. He understood the importance of getting people out of institutions and back into their own communities for their own good and the good of the government’s budget.
It costs way more to keep people in institutions than it does to keep them at home.
Having a child with a disability when you are not independently wealthy is no joke. It’s not fun. It’s not a way to get rich. It’s hard as hell. Please stop supporting these cuts and making life harder for families who need these services. I have not even mentioned how difficult it is get these programs. You must prove you need Medicaid, and you must prove a certain level of disability to get waiver services. Then you must find providers who take Medicaid so you don’t have to pay out of pocket for doctors.
Nor have I mentioned what cutting the Department of Education will do to children with disabilities, but below are links to the laws I mentioned above. These protections will be taken away if that department is gone. I used that department on more than one occasion to remind our school district of laws they tried to ignore.
I’m not saying reforms are not needed. They are. There is a better, legal, ethical way to do it. Let us work together to get it done.
A previous post I wrote to our law makers - http://mindchange4all.blogspot.com/2017/06/an-open-letter-to-american-lawmakers.htmlIDEA - https://sites.ed.gov/idea/statuteregulations/
ADA - https://www.ada.gov
How Waiver Services Began - https://www.innow.org/2021/11/11/disability-history-hcbs/
The US Department of Education - https://www.ed.gov
Learn more about the housing, staffing, and funding crisis through this podcast, which is called Autism Confidential, but pertains to all disabilities. Scroll through the list to find various topics. Though they have speakers from different states, the issues discussed apply to all states. - https://www.autismconfidential.org
On the Autism Confidential podcast, scroll to Episode 43, Dr. Paul Offit: Battling Vaccine Myths Again, to hear from the doctor who convinced me that vaccines do not cause Autism. I used to believe they did, sadly.
How algorithms foster our biases - https://youtu.be/1z9KsNoAmFA?si=s7I7Z81XjlhdeLoC
How algorithms shape our political thoughts - https://www.bbc.com/news/articles/cp8e4p4z97eo
No comments:
Post a Comment