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WHAT IS A KATIE BECKETT WAIVER?

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This will make more sense if you understand the history of how we got here.  Medical technology always moves faster than the systems we set up to pay for things and care for people.  

 

Katie Beckett was born in 1978 and contracted viral encephalitis, which left her dependent on a tracheostomy and ventilator to breathe.  The surgery and technology to save her life existed, but the framework to pay for care didn't.

 

Children who are tracheostomy and ventilator dependent need 24 hour nursing care.  Katie's parents were middle class people - they weren't rich enough to hire nurses on their own, but they made too much money for Katie to get Medicaid to pay for nurses at home.  Medicaid is the ONLY program that pays for caregivers at home, private insurance does not pay for long term care at home.

 

As long as Katie lived in the hospital, private insurance and Medicaid would pay for her care.  But if Katie's parents brought her home, their income was too high for her to qualify for Medicaid.  This is why we say that there is an "institutional bias" in Medicaid. The system pays for expensive care in hospitals, but won't pay for cost effective care at home. Katie lived in the hospital for the first three years of her life, because the rules of Medicaid kept her stuck there.

 

President Reagan signed off on a change in federal Medicaid rules in 1981 that allowed kids like Katie to be eligible for Medicaid while living at home with their families. He left the administration of those waivers to the states, so each state has to set up their own program and rules on what kids can continue to get Medicaid at home.

That created the complicated system we have today. Every state sets up a different program to handle medically fragile kids. Some states have good programs, some states have bad programs. California has lots of great programs for disabled kids! The HCBA Waiver is not one of them. When the HCBA is functional, it's a complicated program that most eligible kids don't even known about. It works great if you can get it, but tons of kids fall through the cracks. When the HCBA Waiver is dysfunctional - like it is now - kids who need care can't get it because they're placed on a waitlist.

 

Note: if the Katie Beckett story were being told today, she would not have been trapped in the hospital for three years. In the 1970s when trach/vent kids were rare, hospitals were terrified to send them home. As trach/vent kids became more common, our health care system decided that building a working system to deliver care at home was too hard. Instead, our system routinely sends ventilator dependent children home without home nursing, and families have to figure out a way to provide 24/7 ICU level care without any help at all. The system was broken back then, it continues to be broken today, but in different ways.

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SO THE HCBA WAIVER IS CALIFORNIA'S VERSION OF A KATIE BECKETT WAIVER?

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Yes, kinda. The HCBA Waiver is actually  1915(c) waiver and not a true "Katie Beckett" TEFRA waiver.

The differences between 1915(c) and TEFRA are complicated, you don't have to understand them.

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WHAT IS THE DIFFERENCE BETWEEN MEDICAID AND MEDI-CAL?

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Medicaid is the federal program that pays for medical care for disabled and poor people. 

MediCal is is California's version of Medicaid.

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I HAVE PRIVATE INSURANCE, WHY DOES MY CHILD NEED MEDI-CAL?

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Because private insurance never covers the amount of home nursing that medically complex, technology dependent children actually need. *

 

Private insurance covers skilled nursing care. Skilled nursing care is the kind of home nursing care that healthy people need after surgery in order to get health again. Skilled nursing visit are limited to a specific task - a nurse will come out and change a wound dressing, but she won't help you with tube feedings or take care of your breathing machines. 

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Medically fragile kids need "private duty" nursing. Private duty nursing is the kind of home nursing that disabled people need in order to live at home. Private duty nursing is not listed to a specific task. A nurse will come out to your house and take care of you for an entire shift. The nurse will monitor breathing machines, handle medications and tube feedings, and provide total care for the patient. 

 

Really good private insurance will cover 100-400 hours of home nursing per year.  That seems like a lot, but if your child needs round-the-clock nursing care, it won't even get you through January.

 

*very rarely, if you have a very good job with a company large enough to have a self funded insurance plan, your insurance will cover private duty nursing. Even if your current insurance has this coverage, there is no guarantee that you'll have the same job forever or that the insurance will continue to cover nursing forever. In fact, it's extremely likely that the company will eliminate private duty nursing coverage if they realize that a ventilator dependent child is actually using the coverage to get 24/7 nursing. Insurance companies are not required to cover private duty nursing. If your private insurance covers private duty nursing... use it! But your child still needs a MediCal waiver because private insurance cannot be trusted to pay for long term care that they are not legally required to pay for.

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IS PRIVATE DUTY NURSING THE ONLY THING THAT THE HCBA WAIVER DOES?

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No. Think of the HCBA Waiver as the key that unlocks the door to MediCal.

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MediCal pays for lots of things related to long term care that private insurance does not:

 

private duty nursing,

In Home Supportive Services (paid care from unlicensed caregivers, including family members),

Pediatric Day Health Care Centers (medical day care provided by nurses),

and more!

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MediCal also make you eligible for lots of things:

 

California Children's Services, a program that pays for things related to kids with major disabilities.

Discounts on electricity,

Discounts on internet service,

and more!

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WHAT IS THE EPSDT WAIVER?

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There is no such thing as the EPSDT Waiver. Lots of people use this phrase because they are confused. EPSDT refers to a set of benefits that states are required to cover for children under a federal program called "early prevention, screening, detection, and treatment." EPSDT is the federal rule that says California is required to pay for private duty nursing for children age 0-21, it's not it's own waiver program.

 

The HCBA Waiver used to be called the IHO Waiver, the SN/AH Waiver, and the NF/AH Waiver. 

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The Regional Center also operates their own waiver - they call it "the waiver" which is very confusing, because there are actually a half a dozen different waivers. The actual name of the Regional Center waiver is the HCBS-DD Waiver.

 

Children who are Regional Center clients and who have MediCal eligibility can get private duty nursing without being enrolled in the HCBA Waiver.

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WHO QUALIFIES FOR THE HCBA WAIVER?

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The child needs to require hospital care as defined in 42 CFR 440.10 or nursing facility care (Level A, B, and Subacute) as defined in 42 CFR 440.40 and 440.155. 

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WHAT DOES THAT ACTUALLY MEAN?

 

1. If a child has a hole in their body that they weren't born with, they qualify. That means tracheostomy tubes, feeding tubes, ostomies, etc. It also means any kind of permanent IV port, like the kind that are used for parenteral nutrition. 

2. If a child needs to have medical interventions to use the bathroom, they qualify. This means catheterization or invasive bowel management programs, it doesn't mean diapers.

3. If a child needs help to breathe, they qualify. Kids who use ventilators, BiPap machines, CPAP machines, or oxygen qualify.

4. If a child is unable to move and is at risk for developing pressure wounds, they can qualify. This means kids who are paralyzed due to an injury or medical condition.

5. If a child has to take complex medications throughout the day to prevent a life threatening condition, they can qualify. This rule has more grey areas - seizure disorders tend to qualify.

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WHAT ABOUT THE REGIONAL CENTER? CAN THE REGIONAL CENTER HELP?

Sometimes!

The Regional Center system does a bunch of different things.

Mostly, it provides services to children and adults with developmental disabilities.

It also provides early intervention services to children age 0-3. 

The HCBS-DD Waiver, administered by the Regional Center provides institutional deeming for children with developmental disabilities. 

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The HCBA waiver provides institutional deeming for children with physical / medical disabilities.

Children who have physical / medical disabilities 

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What about children who have BOTH developmental and medical disabilities? 

Right now, the HCBA Waiver is broken and is putting new applications on a waitlist. 

That means that if a child can qualify for the Regional Center waiver... they should use that pathway, because it actually works.

 

The Regional Centers will generally put children older than age 3 on their waiver for institutional deeming.

For kids age 0-3, they are sometimes willing to extend institutional deeming if they can be convinced that the child will have a lifelong developmental disability. This usually works if the child has a common genetic diagnosis that invariably causes developmental disability, it doesn't work if the child has a rare diagnosis that requires the Regional Center to do homework. 

 

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SO HOW DOES AN HCBA WAIVER KID ACTUALLY GET INSTITUTIONAL DEEMING MEDI-CAL?

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It's complicated! If you have to have MediCal to be on the HCBA Waiver, but you have to be on the HCBA Waiver to get MediCal... how does that even work? 
 

Start by applying for the HCBA Waiver, which is complicated. Instructions on how to apply.

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The best way to apply for MediCal is to go to your county office in person. When you talk to a person, explain that you're applying for MediCal for a child who will be qualifying through a waiver. The person at the county office will not know what the HCBA Waiver is, but they will know what the Regional Center waiver is. Tell them "this is like the Regional Center waiver, but you use eligibility code 6X instead of 6V." They will (hopefully) know what that means.

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Tell the person at the county office that you need help filling out the paperwork, because if you try to do it online, it will mess everything up. The people who work in county MediCal offices can be helpful - you just have to get through to them that your situation is complicated and you need help. Usually someone in the "aged, blind, and disabled" department will know the most about this. 

 

Maybe one day it will be possible to do this online, but right now, it makes everything more confusing.

As soon as I learn how to do this online, I will update this site.

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Once the child is actually enrolled in the HCBA Waiver, the waiver agency will generate an institutional deeming letter for the county. Bring the paper to the county office, the county MediCal eligibility worker will attach an "eligibility code" to your child's file that tells the system to ignore your family income. 

Some people have successfully done this by mailing in the paperwork - but if you can go in person it's faster.

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TELL ME ABOUT THE 30 DAY SSI TRICK!

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If your child lives in a hospital for more than 30 days due to a disability, the federal social security system considers the hospital to be their "home" and considers the child to be a separate "medicaid family budget unit." This means that if your family income is over the limit, it doesn't matter... as long as the child lives in the hospital and not at home. That's the institutional bias in action! 

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Fun fact: low birth weight premature babies and babies with certain genetic syndromes qualify for SSI automatically. Once a child qualifies for SSI, California automatically makes the child eligible for MediCal because the systems are linked. If you apply for SSI and it is granted while the kid is still in the hospital, your child can get MediCal eligibility that will last as long as they are in the hospital. This doesn't always work - state paperwork is slow, federal paperwork is even slower. But for a kid who is going to be in the NICU for 6 months? If you apply when the kiddo is 31 days old, there is time.

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Why don't the hospitals tell families this? Because money! If a child has private insurance, the hospital can bill the family for copays, deductibles, and care that isn't covered by insurance. That can add up to tens of thousands of dollars. If a child has private insurance as primary and MediCal as secondary, the hospital can't bill the family for anything. Hospitals have a strong financial interest in middle class kids NOT getting MediCal as secondary. 

 

The hospitals also don't tell families about this program because their social workers are low paid, overworked, and confused by all of this. That's not the social workers' fault - but it is a conscious business decision made by hospitals. Hospitals have armies of attorneys and accountants and billing personnel to make sure they get paid. They have like 9 hospital social workers who are responsibility for essentially everything that isn't billing. Hospitals know how to file complicated paperwork with government agencies when it benefits them - they make a business decision to not prioritize things like this.

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This is especially important right now, with the HCBA Waiver putting new applications on a waitlist. It takes the system a while for the paperwork to catch up when a child is discharged from the hospital, and during that "slush time" the kid still has MediCal. That gives more time for the HCBA Waiver paperwork to get done. It's hard to predict how much slush time there will be - but any little bit helps.

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HOW DOES AN HCBA WAIVER INSTITUTIONAL DEEMING KID DO YEARLY RENEWALS? 

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The waiver agency will generate a letter that says "this kid gets institutional deeming through the HCBA Waiver."

Best case scenario: the waiver agency sends the letter to your county, the county processes it, everything is cool.

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That works about 60% of the time.

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If it doesn't work:

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Have the waiver agency send you the letter. Fill out the yearly renewal paperwork, and mail it back with the waiver agency institutional deeming letter stapled to the front of the renewal paperwork. Fill out the renewal paperwork with the child's name and the child's income / assets. On every page of the renewal paperwork write "HCBA Waiver institutional deeming use code 6X" anywhere you can make it fit. Don't do the renewal online, it will mess everything up. 

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HOW LONG DOES IT TAKE TO GET INSTITUTIONAL DEEMING FROM THE HCBA WAIVER?

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When the HCBA Waiver was functional, it took about 90 days for a child to get enrolled in the waiver.

That worked, because home nursing agencies are able to bill 90 days back in time from the date MediCal is approved.

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The HCBA Waiver is currently putting all new applications on a waiting list.

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Children who need institutional deeming have priority - that means they get bumped to the top of the waiting list.

Being a priority means that instead of waiting years to get care, kids will only have to wait months to get care.

That's still bad!

 

Families of kids who are on the HCBA Waiting list have two choices - and they're both bad!

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1. The child can in hospital, or (worse) in a pediatric subacute facility. Institutional care is developmentally devastating. We don't force kids with intellectual disabilities into care facilities any more, but we routinely force medically fragile kids into institutional care.

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2. The child can live at home without access to medically necessary nursing care. This is dangerous - families can't reasonably be expected to provide medically intensive 24/7 care to a child. Families take the risk every day, because the other option is so terrible and the system is broken. 

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CAN CHILDREN WHO ARE ON THE HCBA WAIVER WAITLIST GET INSTITUTIONAL DEEMING?

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No. The only way to get institutional deeming through the HCBA Waiver is to actually be enrolled in the waiver. 

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Some children who are on the waitlist who have intellectual disabilities can qualify for another waiver - the HCBS-DD Waiver. The HCBS-DD Waiver is administered by the Regional Center system. The HCBS-DD Waiver does not have a waitlist. If your child has Regional Center services, tell your worker to enroll them in the HCBS-DD Waiver. This is supposed to be quick - but Regional Centers have complicated policies about enrolling children under age 3 in their waiver. 

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Kids who have a need for care because of a medical condition who does not have an intellectual disability can't get care right now.

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WHY IS CALIFORNIA PUTTING DISABLED KIDS ON A WAITING LIST?​

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There is no justification ​for the HCBA Waiver having a capacity limit. Disabled people who need care at home should be able to get it. We don't put a limit on how many kids can get care in a hospital, or on how many disabled kids can live in institutions. We should not set a limit on how many disabled people can get care at home.

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The realistic explanation for why this happened is that this is a small program that helps a very small group of people, and the state just didn't prioritize funding it because legislators don't really understand it. That's not a satisfying explanation, but it's pretty accurate.
 

MY CHILD IS ON THE WAITING LIST, WHAT CAN I DO ABOUT IT?

 

Contact your state legislator - here is how:

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https://findyourrep.legislature.ca.gov/

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You don't have to understand 100% of a problem to call your legislator and ask for help. It's their job to help you!

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Every state legislator has people in their office who do case work. That means they help constituents (you) figure out how to make state programs work. The people in your legislator's office who do case work may not have heard of this program - but they can figure it out. They can contact DHCS (the state agency that manages the HCBA Waiver) and say "hey, this kid needs help, how long is this going to take?" and get an answer much faster than you would on your own.

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Long term, this gets fixed by having the legislature appropriate more money for the HCBA Waiver in the state budget. That's a big, complicated thing to ask for! Part of asking for that is that legislators need to understand that this issue affects people in their district. When you call your legislator for help with a problem, you're not just helping yourself - you're helping everybody who has the same problem.

 

 

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