AHCA Jeopardizes Rachel’s Pink House

All of us know someone who works this system to receive government supports. Yes, we all know people on “welfare” who abuse the system. The battle cry is often “yes, cut funding because most of the people receiving the services are perfectly capable of working” or something to that effect. I agree that we should address this wrong.  I know more than a few people who fit this battle cry.

What I don’t think most people may realize is that there are some other people who depend on this system to live independently and work in meaningful employment.  Did you know that my Rachel is one of these people who receives support from this very “welfare” system and will probably need those supports to live independently? I’m going out on a limb here and saying that I suspect most people do not realize that Medicaid is the entry  into the system for individuals with disabilities.

We had a prenatal diagnosis so we were able to line up some of Rachel’s early intervention services even before she was born. As people described waiting lists and IFSP’s and future IEP’s and Family Support Services and something called Medicaid Waivers, I remember thinking that we had good insurance and surely all this fuss wasn’t necessary.  But did you know that if not for early intervention services mandated by the government 30 plus years ago, Rachel probably wouldn’t have received speech therapy, occupation therapy or physical therapy because she has Down syndrome. Down syndrome is a pre-existing condition and even with our outstanding employer-sponsored insurance, it wouldn’t pay for those services. Our middle class family could not have afforded those services. I have often said I am eternally grateful for the services we received through Memphis based Special Kids and Families and the Harwood Center as part of the Tennessee Early Intervention System.

Fast forward to today. Three weeks from today Rachel turns 18. She has one more year of high school.  She wants to go to college. She wants to get a job. She wants to drive and maybe someday she will, but I would guess that’s a long shot. She wants to get married.  She wants to live in that Pink House. Rachel is very capable, but she need supports like transportation, job training and coaching, assistance managing her finances and will probably need some level of personal care assistance to live independently.  These long-term services and supports (LTSS) for independent living are provided through something called a Home and Community Based Services (HCBS) Waiver. Yep, the entry into the system for independent livings supports for my Rachel and thousands like her is: Medicaid. Yes, I think that is kind of crazy but that’s a different blog for another day. Medicaid Waivers are optional programs and of course every state’s program looks a little different. Some states do a good job. Other states do pretty terrible job and there are a lot in the middle. Optional means that when funding is tight, these are likely to be cut. There are already lengthy waiting lists in many states. By the way, if you decide to move or your job relocates you, you go to the bottom of the wait list in the new state and start over.

So you say but what about the ABLE Act you worked so long and hard to pass. Won’t that help? Yes, it will help offset some of these costs but consider we have only been able to open an ABLE Account this year.  You are limited to $14,000 per year up to $100,000 without jeopardizing government supports. It will take time to build that enough to help very much. We hope Rachel lives to be an old lady and her ABLE account will continuously need to be replenished.  Living to be an old lady means living longer than we live and that’s a blog for another day, too! Her ABLE account will probably not be sufficient to offset all of the costs for her to work in a meaningful job and live independently.

Trust me when I say we don’t want to depend on the government.  We want Rachel to make her own way and if at some point she doesn’t government assistance, we will be very happy.  We would be most happy if we didn’t have to meet annually to confirm that she still has Down syndrome and complete an overwhelming pile of paperwork. Quite honestly,  it can be humiliating and we would be most pleased if we didn’t have to jump through all the invasive hoops to keep her on a list or to qualify her to receive some of these supports.  We have been fortunate because Rachel has been healthy overall, and we have good private insurance. In the not so distant future she will age out of our insurance and we hope she has a job with benefits at that time. The reality is that depending on the statistics you look at, individuals with intellectual disabilities have about a 70% unemployment rate.  She may need Medicaid for her primary insurance, too.

So what does this have to do with the recently passed American Health Care Act (AHCA)? While the unknowns associated with pre-existing conditions is a concern, the bigger concern is that the house version of the AHCA cuts over $800 billion from the Medicaid budget and changes the funding from the current formula to a per capita cap and/or block grant system. This is a link to an article that explains all of this and why it is not good for individuals with disabilities much better than I can – Why is Medicaid Important to People with Disabilities?

The president’s proposed budget cuts an additional $600 billion from Medicaid for a combined total of about $1,400,000,000 in cuts over the next ten years. This will definitely save money for the federal government by taking services from our country’s most vulnerable citizens. The philosophy is to put this back on states who are already struggling to meet needs. While I’m on that subject, in many states Medicaid pays for some of the therapies in the public school system. In our district alone, almost $2 million was reimbursed through Medicaid. IDEA (Individuals with Disabilities Education) mandates the services be provided so the school system will have to absorb these costs. By the way, the federal government committed to 40% of the funding of IDEA and currently funds it at about 16% leaving the local schools to make up the difference.

I’m not an expert but I can tell you these numbers, cuts and changes add up to a disaster and major setback for individuals with disabilities. We are hoping that the Senate will make significant changes in their version of the healthcare bill.  This bill puts Rachel’s Pink House dream in major jeopardy.  My plea is the same as it was when we were trying to pass the ABLE Act: Rachel’s counting on Congress to DO THE RIGHT THING. And when you are thinking about all those people who are abusing the system, I hope you will see this precious little face

Please remember that Rachel wants to live with respect and dignity and these significant cuts will likely impact her ability to do this.

NOTE & RESOURCES: This has been a difficult blog to write. This is not intended to solicit sympathy. We know that we are #blessedbeyondmeasure. Many of our friends in the disability community are not as fortunate. Their children have complex medical needs and depend on Medicaid to stay alive. I am simply trying to provide education and another viewpoint. Advocating is a labor of love and conviction for me. The issues are complex, and I am not an expert. I am in a learn-as-you-go mode trying to figure out and navigate a complicated and broken system because, Rachel’s Pink House is worth it. This link takes you to a brief introduction to the Basics of Medicaid.

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  1. Thank you for putting into words, this journey many of us are on with you as well. Thank you for the reference to the Basics of Medicaid too! Beautifully written from the heart….of many!!
    Thank you!
    Nancy & Mariah

      1. Not sure how that happened Susan, but thank you for reading and thank you for all you are doing!

  2. I understand completely. There should be a system in place to check the wether the folks receiving services are able and not deserving or not able and still need the service. That’s the way it works with Social Security disability. You are approved but will be reviewed within an specific time to determine continued eligibility. Why is Medicaid and the services that support Rachel’s services not under the same review guidelines? Down syndrome does not have a cure however these people do grow up and become able bodied with support from services. lol at the tv show, “Born This Way”, they are able bodied employed actor and actresses who have won Emmy Awards. All grew up with support from social services.

    1. I have a daughter with Down Syndrome who is 41 and will never live alone. She can’t even be left alone. She works in a sheltered work place. She really needs all her Medicaid services ! Cuts would be devastating for her !!!?

    1. Renee- thank you for reading and engaging. It is a complicated issue. And if the change to Per Capita Caps , most likely programs will be cut because of the lack of money. We all know we have some “fixes” in the system but not on the backs of our most marginalized and vulnerable citizens. You state of Texas has two very important Senators, Cornyn and Cruz. It would be great if you would call their offices and tell them to please save Medicaid!

  3. Thanks for sharing,
    Would like to add that LBJ’s Great Society was developed for a reason. Outcomes have meant much to so many. It has allowed a better quality of life, a life with health support, and a life where there is a safety net. As I think of my own son’s future I look at my 90 year old mother. Thank goodness she has saving and 7 children able to support and help. Yet, you read daily of the millions that don’t have the resources or supports. Today’s message often seems to be pull yourself up by your boot straps. What happens if you don’t have any boot straps? Sadly the one’s that often need the most assistance are the same individuals that can’t advocate for their needs. It appears to current trend is to cut support and services for those that don’t have the ability to advocate (the poor, the elderly, the disabled, the uneducated) . Not sure where the teachings of Christ fit in there but that is for another day.

    1. Sean – thank you for reading. Yes, there are several blogs for another day. I just don’t think people understand all that Medicaid does.

  4. Jawanda, thank you for the education about this! It’s so hard to know exactly what is and isn’t in a bill for the average, busy citizen. We certainly don’t feel confident in whatever the main stream media tells us anymore! I trust your opinion on this and know that you have extensive knowledge and experience. Love you much!

    1. Glenda-
      It is hard to know what is factual these days. I rely on many sources to try to figure things out. If I did not have Rachel, I wouldn’t understand all of this. Truthfully, I still don’t. But I do know that many people like Rachel will need supports through Medicaid to be independent. Thanks for reading and learning alongside us!

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