Should I Have Just Put Her In An Institution ?
I am an educated healthcare professional with an active license. However, I was forced to give up my nursing career because of a lack of services for an adult disabled daughter. Should I have just put my daughter in an institution so that I could keep my job, keep my health insurance, keep disability insurance, and participate in a 401k to save for my own retirement?
Does chatter about Medicaid funding matter to you? What about Medicaid Waivers? It most definitely matters to me. Actually, it is critical to me and my family.
What Do Medicaid and Waivers Have To Do With Our Family?
Medicaid is Jessica’s ONLY resource for insurance and access to healthcare. ONLY. She will never be able to have a job with benefits nor be able to afford private insurance. She is only 29-years-old and not eligible for Medicare.
But what about Waivers? Are you aware of the purpose of Medicaid Waivers? The purpose is to help prevent individuals from being institutionalized.
The 1915(c) waiver is known as the “home and community-based services waiver” (HCBS) because it allows states to treat certain Medicaid populations in home or other community based settings rather than in institutional or long-term care facilities such as hospitals or nursing homes.
Jessica’s Diagnoses Are Complex
Having multiple disabilities compounds each individual disability. Autistics are usually visual learners, but Jessica is blind. Blind people learn through listening and through their hands, but Jess has seriously impaired attention span and impaired fine motor skills. Her extensive vocabulary and good receptive language skills are paired with difficulty in expressive language. Add to those things constant and severe anxiety, and that is a rough sketch of what we deal with.
Apparently, Jess is THAT different. THAT unusual. An enigma. Recently, a case worker in the field for 20+ years expressed surprise that I had ever placed Jess in a day program and then commented on personal observations of the unrelenting demand of caring for Jessica.
Years ago, a special education professional who knew Jess well told me that in 40+ years he had never seen anyone like her. I asked, “Is Jess really that unique?” Without hesitation, the answer was a resounding, “Yes!”
What About Institutions?
How many people do you know who have special needs loved ones who they want to live in an institution? I don’t know of any.
Too much time has passed and too many people have either forgotten or have never learned of the horrors of institutions of the past. What was it like when there wasn’t a system in place for including special populations in the community, when there weren’t resources and families were forced to give up their loved ones in order to survive? Here is a reminder:
(warning – contents of this video are distressing)
If that wasn’t enough, here is more:
There are plenty more examples and legal cases to reference. This wasn’t even that long ago, actually. The last of these horrid facilities closed within my own lifetime when I was a child.
Jessica’s Medicaid Waiver was in place and funded by June, 2014. She is in the Comprehensive Supports Waiver Program (COMP). At first her waiver was designated mostly for group services with a small portion designated to self-directing.
Once Jess had group-services funding, she started attending an adult day program at a facility in a bordering state, even though sending her to that program was what I never wanted. I was still hoping to keep my nursing job.
Within four months of starting in that program, Jess had been through four teachers, a complete turnover of room helpers, and was in frequent discord with the bus staff. She was having constant anxiety, urinating in her clothes, and calling me crying every day, oftentimes multiple times a day. (The Beginning of the End)
The Final Accommodation
This is the point at which I decided it was time to temporarily leave my nursing career so that I could provide some stability at home and help Jessica adjust to her new day program. That adjustment never happened. Jess stopped going to the school. I never went back to nursing and began doing contract work from home.
When she stopped going to the day program, the group funding was redesignated to all self-directing. This allowed us to customize Jessica’s schedule and goals to suit her own needs.
With the self-directing waiver, Jessica (with my help) is able to hire part-time staff to engage her in daily activities in a home environment as well as out in the community. She works on specific goals which relate to increasing independence skills. While Jess is with her staff, I have quiet, uninterrupted hours to do my contract work (which pays a fraction of what my nursing position paid.)
Let’s look at the what-if’s. What if caps are put on Medicaid?
Recent federal reform proposals from House and Senate would change the current financing system for Medicaid. As of the writing of this post, the federal government guarantees a share of the total program spending to states. With the new proposal, the federal government would limit federal cost exposure by setting a per capita cap on federal payments to a state.
Simple and short: States would get a set amount of federal funding based on enrollment numbers, not based on enrollee needs. Therefore, states would be motivated to enroll healthy young adults and would be highly motivated to prevent or discourage enrollment of high risk groups such as the elderly and disabled.
Based off the Congressional Budget Office (CBO) there are estimates that 15 million individuals will lose medicaid by 2026.
In my state, the estimate is that 1 million individuals will lose Medicaid by 2026.
What if Jess didn’t receive Medicaid?
- She wouldn’t have access to healthcare
- She wouldn’t have a Waiver
- Without the Waiver, her staff would lose their jobs
- Negative personal impact on staff
- Negative impact on economy
- She would lose her access to the community and would be isolated at home
- Negative impact on her quality of life
- Increase in anxiety
- Decrease of progress on goals towards independence
- I would care for Jess full-time around the clock 24/7
- My availability to work would all but disappear
- I would probably lose my house
- My ability to positively contribute to the economy would disappear
- My ability to save for my own future would disappear
- Without the Waiver, her staff would lose their jobs
What Am I To Do In That Scenario?
What if Jess needs healthcare or has a health crisis? Do we just say, oh well, and let her die?
What do we do without a home? Become homeless? Live in shelters, wander the streets?
That doesn’t have to happen. In theory, I could abandon Jess. She could end up a ward of the state. Then what? I don’t know, but I could go back to my career. Then, I could afford a place to live, food on my table, clothes to wear, healthcare for myself, save for my future, etc. I would have everything back.
And what is life without my Jess?
Without Jess, I wouldn’t need a home, food, clothes, insurance, money, or even breath in my lungs.
Multiply this scenario by 15,000,000 by the year 2026.
I have literally been purposely avoiding all the bill chatter, as my brain simply can’t live there on a daily basis. Yes, without the NOW waiver, Sam has no programming at all, no chance at semi-independent living, and our (my) life will be greatly impacted for the remainder of my days worrying about caring for a disabled adult for my lifetime. What can legislators NOT see about this? Off to drink my tea and meditate…
Jayne, I completely understand the avoidance, as that has been my ultimate goal since pre-November. It’s so close to all falling apart now and I deeply worry about our country more than I worry even about Jessica’s future. Tea & meditation sounds perfect! 🙂