Project Shui for Tay-Sachs

Katie Beckett Benefits
Rachaeli's Experience with the Medicaid Waiver

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Rachaeli has Tay-Sachs disease, a genetic, neurodegenerative disorder which is always fatal in children.  The average life expectancy is 3-5 years.

When Rachaeli was diagnosed, she was 13 months old and still "functioning" like a normal baby.  That is, she played, listened to music, hung out with her brothers, etc. She was a very happy baby. She was not walking or talking, but she had not yet started the rapid decline, or loss of developmental milestones, that was promised for the upcoming year. She did have swallowing problems and needed a feeding tube. Prior to the feeding tube, she had breathing problems because food slipped into the lungs causing an aspiration pneumonia.

Shortly after Rachaeli's diagnosis, I was approached by a friend who told me about the Katie Beckett/Deeming Waiver.  She explained that kids who have health insurance and serious medical needs were eligible for this waiver; it was a Medicaid waiver. She explained that even if the child was from a middle (or even upper) class family, he or she would qualify for this waiver if their medical conditioned was severe enough.  Actually, back then (it was 2003), the medical conditions did not have to be that severe. From what I gleaned, if the child had developmental delays requiring therapy, they would qualify. I believe the criteria for this waiver have become far more stringent over the years.

Just to backtrack a bit, Rachaeli was already diagnosed with hypotonia, or low muscle tone, at 8 months of age. She was referred to an early intervention program; in Georgia, it is called Babies Can't Wait.  Her evaluation, which was 3 or 4 months prior to her diagnosis with Tay-Sachs, found she was in need of physical therapy two times a week, occupational therapy two times a week, and speech therapy one to two times a week. At this point, if I had know about the Katie Beckett Waiver, Rachaeli would probably have qualified simply due to her vast therapeutic needs.

I want to emphasize the "if I had known," because, from my experience, information about this Medicaid waiver (or any other assistance from the government) is not offered unless the parent specifically asks about it, and the parent cannot ask about it if they do not know it exists. My information came from parents of kids with special needs, not from professionals. When I then asked the professionals (the social worker at the hospital for one), they right away came with an application packet for the waiver.  If I had not known parents with special needs children, and they had not approached me (I was too overwhelmed to know who to ask and what to ask about), I would not know to apply.

Why is a Medicaid waiver offered to children with health insurance?

Because the government does not want these children to drop their primary insurance and switch entirely to Medicaid, for which they would qualify for medical reasons, despite their family income. They want the primary insurance (Blue Cross, Aetna, etc.) to pay the 80%, and they, Medicaid, pick up the rest. 

Children who are high utilizers of the health care system eventually run out of benefits (at least for the year), rack up medical bills from all the 20 or 30% copays, and/or cause their parents insurance premiums to skyrocket. We experienced all three.  From our first hospitalization, a 3-day ICU stay for "status asthmaticus" before Rachaeli's diagnosis, our 20% copay was thousands of dollars. Luckily, the Medicaid waiver covered us retrospectively since she already had Tay-Sachs; it was just not identified yet. With respect to benefits, Rachaeli would require far more therapy sessions than allowed by her primary insurance. When she started receiving in-home nursing care, her benefits from her primary insurance for this benefit, ran out by the second week of the year. Medicaid paid for nursing care the remaining 50 or 51 weeks of the year. Regarding premiums, our family's healthy insurance monthly cost went from about $550 to over $3000 (note: this was over the course of 8 years).

How does the Katie Beckett Waiver take care all this?

The Katie Beckett Waiver gives the child with special needs Medicaid, health care coverage provided by the government. However, the Medicaid is used as a secondary insurance, to cover the costs not covered by the primary insurance.  For example, a $30 copay for a doctor visit would be paid for by Medicaid, while the doctor visit would be covered by the primary insurance. Or, if the primary insurance paid for $600 of an $1000-allowable ankle-foot orthotic device, Medicaid would pay the remaining $400. Basically, the Katie Beckett Waiver kept us from paying for most out of pocket medical expenses. (Note: Medicaid would only pay for products and services "allowed" by the primary insurance, and there were some products and services which were not covered at all. One example was a specialty medication from an out-of-state pharmacy. While our primary insurance paid 80% of it, Medicaid would not pick up the remaining 20% because the only pharmacy that dispensed this rarely used medication was in another state.

But all this was not the primary intention of the Katie Beckett/Deeming Waiver. The primary intention was to allow a child to be cared for at home, rather than in an institution.  A child like Rachaeli would certainly qualify as a nursing home patient, as she required medical care and treatment throughout the day and night and continuous monitoring for seizures and aspiration.  She required total care of all her daily needs. Before this waiver came into existence in 1981, a child like Rachaeli could live in an institution and have all of her medical costs paid by the government, but if she lived at home, NONE of the medical costs would be paid for. Basically, due to Medicaid regulations, parents were forced to place their children in nursing homes unless they were financially loaded.  

Back then, if a disabled child lived at home, he or she might be considered ineligible for Medicaid if their parents' income was over a certain amount.  But if the same disabled child was in an institution for a protracted period, she would be granted Medicaid to cover the costs despite her parents' income.

In Katie Beckett's case, the doctor's agreed she could safely be taken care of at home, but federal regulations -Medicaid rules - forbade payment of home care, even though the cost to the government would be a fraction of the price they were paying to keep her in the hospital. Ronald Reagan changed all this. This special Medicaid waiver was created so that Katie Beckett could come home.

Do all states offer a Katie Beckett/Deeming Waiver program?

Most states do, but eligibility and benefits may vary from state to state. It is important to have a contact at your state's Medicaid office to learn the specific requirements in your state. In Georgia, it is the Department of Family and Children's Services (DFCS), but to have a contact, you have to become a case in their system.  You'll then be given a case manager.  This is not an easy task if it is your first encounter with Family Services. In Georgia, in order to have a case, you have to apply for Medicaid using the standard Medicaid forms.  If you do not qualify for financial reasons, you must make it clear you are applying for this waiver or else the application might get lost, as mine did. In fact, my information never made it into the system the first go-round.

The problem I found was than most people in the Medicaid office did not know about the Katie Beckett Waiver, so when I asked for the application form, they looked at me like I was speaking another language. In fact, the people they asked in the front office just shrugged their shoulders. Even when I explained, "I was told to come here with my daughter to fill out forms and speak to someone about the Deeming Waiver. I won't qualify for Medicaid. I know I need a special application. It's because my daughter has a medical illness..." I was just told to fill out the forms, turn them in, and that someone will contact me at some time in the future. They didn't.

It was only after Rachaeli's second hospitalization at 13 months, when she was diagnosed with Tay-Sachs, that we got our hands on a Katie Beckett Waiver application from the hospital social worker.  A friend who works with special needs children helped us fill it out. My husband then hand carried the application to the DFCS office and demanded to speak to a caseworker who knew about this waiver. He got it taken care of that day. Being a psychiatrist, a physician, helped, probably a lot. Unfortunately, not everyone has it in them to be so forceful, and so they wait, and wait some more.  Many give up. 
The Katie Beckett Waiver does NOT last a lifetime. It is only for children under the age of 18 or 21, depending on the state. Also, an application must be filled out every year.  It is a tedious process requiring assistance from the child's doctors and nurses.  It is best if you learn how to complete the application yourself and just have your doctor look it over and sign it.  It is extremely helpful if you could update the letters yourself each year - take last year's and make the appropriate changes - and then have your doctor read and sign them. For the physician, it is an extremely tedious process. In general, the detail a parent could add to a letter, with specifics of the child's progress and setbacks, is much greater, and most likely far more thorough than that of a doctor or nurse, who may have 5 more of these applications to do that day.

The whole process is stressful. If any part of the application is not in the packet, or is filled out inaccurately, the application goes on hold until it is fixed. This happened one time with me when the doctor signed in the wrong box on a DMA6 form (we'll get to that later). 

This is the checklist sent to me each year:

Enclosed is a packet of forms to be completed for an application or review for the Katie Beckett Medicaid Class of Assistance.  Please read all the information contained herein and complete the forms EXACTLY as outlined.  Should you have problems or questions, contact the Medicaid Eligibility Specialist (MES) at the telephone number provided above.  The packet of forms should include the following as checked below:

  q  Medicaid  Application, Form 94

q  Medicaid Review, Form 222

q  Verification Checklist, Form 981

q  Pediatric DMA-6(A), Physician’s Recommendation for Pediatric Care

q  Pediatric DMA-6(A) Instructions

q  TEFRA/Katie Beckett Care Plan, DMA Form 706

q  TEFRA/Katie Beckett Care Plan Instructions

q  TEFRA/Katie Beckett Cost-Effectiveness Form, DMA Form 704

q  Other  _________________________


Please return the completed information to DFCS by _____________________.

There are other Medicaid waivers which may be a better fit for your child. These waivers and/or their eligibility requirements vary from state to state.  A friend who has her child on a Medicaid waiver told me about another Medicaid waiver program which can be used in lieu of Katie Beckett and has a simple application; unfortunately, I cannot recall the name.  However, one relinquishes their Katie Beckett waiver if they apply to a different waiver program, and I was hesitant to do such a thing.  

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