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Home and Community Based Alternatives Waiver (HCBA) 101

Home and Community Based Alternatives Waiver (HCBA) 101


Published: Apr. 23, 2024Updated: May. 7, 2024

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Bringing home a new baby from the hospital is hard for any family. Bringing home a baby who has to be fed through a tube or who uses a machine to help them breathe is even more stressful. However, children who have complex medical care needs can live at home with their families and indeed thrive in that environment — but sometimes families need a little help.

California has programs in place to help families take care of children with complex medical needs at home. These programs almost all require that the child have Medi-Cal eligibility. Medi-Cal is California’s health insurance program for people who live below the 266% of the federal poverty threshold or who have disabilities. The Home and Community Based Alternative (HCBA) waiver makes it possible for children who have complex medical care needs to qualify for Medi-Cal in order to access these services, even if their family income is over the usual limit to qualify for Medi-Cal.

3 key takeaways
  1. The HCBA waiver is intended for individuals with complex medical needs who need round-the-clock care.
  2. The HCBA waiver can help children who don't qualify for Regional Center still get access to Medi-Cal.
  3. There is a waitlist for the HCBA waiver, so once you apply through a Waiver Agency, your child will likely have to wait several months before getting Medi-Cal.

HCBA: overview

Children who have Medi-Cal are eligible for the following long term care services:

  • Private duty nursing (in-home nursing) - nurses who come to your home to provide care for a child who has complex medical needs. If your child has medical care needs that can be life threatening — like a tracheostomy — sometimes the hospital will help you arrange for home nursing so you can bring your child home.
  • Pediatric day health centers — specialized medical day care facilities with nurses on staff to take care of children with medical care needs.
  • In-Home Supportive Services (IHSS) — caregivers to care for children who have care needs beyond what is typical for a child of the same age. Parents can be paid as IHSS caregivers for their child or they can hire separate IHSS care providers. Parents are responsible for training IHSS providers on how to handle their child’s medical care needs.
  • Waiver Personal Care Services (WPCS) – caregivers who provide the same kind of care that IHSS provides. IHSS can provide a maximum of 283 hours of care per month, WPCS provides additional care for people who need up to twenty-four hours a day of nursing level care. WPCS is only available to people who are enrolled in the HCBA Waiver.
  • California Children’s Services (CCS) — access to speciality care and medical supplies related to complex medical conditions.

Most children don’t need to enroll in the HCBA waiver to access home nursing care. If your child qualifies for Medi-Cal because your family income is below 266% of the federal poverty threshold or by being enrolled in the HCBS-DD waiver through the Regional Center, you do not need to enroll in the HCBA Waiver to access home nursing care. Medi-Cal covers home nursing care for children under the age of twenty-one.

The HCBA waiver is a small program that provides services to children who need access to nursing care at home because they have significant medical care needs and can’t qualify for Regional Center services.

Even if your family income is below 266% of the federal poverty threshold now, it’s important to know that the HCBA waiver exists. If your child uses long-term care services through Medi-Cal and you are offered a job with better pay, you don’t have to turn down the job to keep your child eligible for Medi-Cal. Apply for the HCBA waiver for your child as soon as you accept a job that pays more; don’t wait until Medi-Cal sends a notice that your child has lost Medi-Cal eligibility.

This all sounds really complicated – that’s because it is really complicated. The HCBA waiver solves a big problem for a small group of medically fragile children who don’t have any other way to access care at home.

Who qualifies for the HCBA waiver?

The Home and Community Based Alternatives (HCBA) waiver is a resource that makes it possible for medically fragile, technology-dependent children and adults to live at home with their families instead of living in institutions.

The term “medically fragile” refers to a person who has a medical condition that requires round-the-clock medical supervision. For example, a child who has a seizure disorder may need to be supervised by a nurse or a person who has been trained to give them emergency medications.

“Technology dependent” refers to a person who depends on a machine to do something that the body normally does on its own. A child who has a feeding tube and gets nutrition from a feeding pump is technology dependent, and so is a child who uses a ventilator for breathing. Being technology dependent sounds a lot scarier than it actually is. When most people think about ventilators, they think about people who are very sick in the hospital. Many children who are technology dependent are stable and it’s safe for them to live at home — they just need to learn to navigate life with a few extra accessories.

“Institutional deeming” is available through the HCBA Waiver so that children who wouldn’t otherwise qualify for Medi-Cal because their family income is over the limit can access long-term care services through Medi-Cal. But how exactly does the waiver help kids with medically intensive disabilities, who qualifies, and how do you apply? It may seem like a lot to navigate, but it doesn’t have to feel impossible — we’re breaking down all you need to know about the HCBA waiver.

The Katie Beckett story

To understand institutional deeming waivers, it helps to learn a little bit of disability history. Katie Beckett was born in Iowa in 1978. As an infant, she contracted viral encephalitis. Katie depended on a tracheostomy (a surgically placed tube in her neck) and a ventilator to breathe for her.

Katie lived the first three years of her life in the hospital because the medical care system would pay for her ventilator and for nurses to take care of her only if she lived in an institution. Katie’s parents were members of the middle class — they made too much money to qualify for Medicaid but not enough money to pay for round-the-clock nursing at home to take care of Katie. As long as Katie lived in the hospital, Medicaid didn’t count her parent’s income against her, and she qualified for services. If she went home, her parent’s income would lock her out of receiving services. The rules of the Medicaid system made it impossible for Katie and other children like her to get out of institutional care unless parents quit their jobs and spent all their savings first.

President Reagan signed a federal law in 1981 that allowed states to implement programs that would give children like Katie institutional deeming. Under these programs (called “waivers” because the federal government waives certain requirements usually imposed on state use of federal Medicaid funds), the state treats the child as if they still live in an institution even though they live at home with their family, so that the child can be eligible to get care at home. Learn more about Katie Beckett’s story here. In many states, these programs are still called “Katie Beckett waivers” today.

What does “institutional deeming” mean?

To understand how institutional deeming works, it helps to understand how the Medicaid system works. Medicaid is a federal program that provides long-term care to people with incomes below the federal poverty threshold and those with disabilities. Medi-Cal is California’s version of Medicaid.

Usually, the system looks at family income to decide whether children are eligible for Medi-Cal. When children live at home with their families, the parent’s income is “deemed” to the child, because every member of the household is considered to be in the same “Medi-Cal Family Budget Unit.” These terms can sound really complicated, but if you ever have to advocate to fix your child’s Medi-Cal paperwork, it helps to speak their language.

An institution is a facility that is paid to provide for the total care of a person. That means the institution is paid to care for all the person’s needs — food, shelter, and medical care. Hospitals and nursing homes are institutions.

When a person lives in an institution, they are considered an independent Medi-Cal Family Budget Unit even if they are part of a family when they live at home. These “institutional” Medi-Cal rules apply to children who are hospitalized for more than 30 days due to a disability. The federal government defines disability for children as being “marked and severe functional limitations” that are expected to last more than 12 months or result in death. An infant who is in the NICU for more than 30 days can be considered disabled under these rules if they have a low birthweight, or if they use a feeding tube or ventilator. A child who is in the hospital for more than 30 days can be considered disabled under these rules if they have any of the conditions listed by the Social Security Administration.

When a child is in an institution, the Medi-Cal system treats them as an independent person. Since babies in the hospital generally don’t have income (how could they?) they qualify for Medi-Cal based on their lack of income. When they’re at home, children can qualify for Medi-Cal with family incomes up to 266% of the federal poverty threshold. Note: for people with disabilities, there used to be a resource/asset limit as well, since eligibility was tied to the regulations for Supplemental Security Income. However, in California, the asset limit has been phased out effective January 1, 2024 for Medi-Cal only (SSI still has an asset limit). To learn more about the asset limit phase-out for Medi-Cal recipients, see our article here.

Institutional deeming means that for paperwork purposes, the Medi-Cal system agrees to treat a child who is living at home as if they were living in an institution. Institutional deeming is a solution that seems complicated, but the problem it solves is simple. California doesn’t want children with disabilities to have to live in institutions in order to get care, but federal Medicaid rules are complicated. That means that California has to have a complicated program to solve a simple problem.

Institutional deeming in California

Every state gets to decide how to manage their institutional deeming program, which means there is wide variation from state to state on whether children can get services at home. California has programs called “home and community-based services waivers” — or 1915(c) waivers — that help people get Medi-Cal services at home. The HCBA waiver is one of them.

California provides institutional deeming to two groups of children:

  • Children with developmental disabilities who are Regional Center clients can access institutional deeming through the HCBS-DD waiver or the Self-Determination Program (SDP) waiver. Both of these waivers are administered by Regional Centers. Children who have developmental disabilities are at risk of having to live in a group home or another institutional care setting if they can’t access help from Medi-Cal at home.
  • Children with medically intensive disabilities who need nursing care can access institutional deeming through the HCBA waiver, which is administered through waiver agencies. Children with medically intensive disabilities are at risk of having to live in a hospital or pediatric nursing home if they can’t access help from Medi-Cal at home.

Medi-Cal and qualifying for the HCBA waiver

Private insurance — the kind of insurance that people get from their jobs — covers the kind of medical care that people get from hospitals and doctors. However, private insurance typically doesn’t cover long-term care — the kind of care that happens in nursing homes or via caregivers in people’s own homes. Private insurance very rarely covers the kind of private duty home nursing care that medically complex, technology dependent children actually need.

Medi-Cal is the only program that consistently pays for long-term care.

For children who can’t qualify for Medi-Cal because their family income is too high, institutional deeming is a pathway to access services at home. Institutional deeming is also important for families who have income that fluctuates in and out of the Medi-Cal eligibility range, because medically fragile children need consistent access to care.

Note: a child doesn’t have to actually get home nursing care in order to be enrolled in the HCBA waiver; they just have to have a medical condition that qualifies them to get nursing care. In essence, the HCBA waiver opens the door to Medi-Cal for children who would otherwise be ineligible. Due to low Medi-Cal reimbursement rates and a shortage of nurses in general, families of children who qualify for home nursing can’t always find a nurse who will actually work on their child’s case. If the child has a qualifying need for nursing, they can still enroll in the HCBA waiver in order to access other Medi-Cal long-term care services (like IHSS or WPCS) while their family searches for nursing coverage.

Qualifying conditions for the HCBA waiver

Not every child who has a medical diagnosis will qualify for the HCBA waiver. The evaluation is based on what kind of care needs the child has at home. A child who has routine care needs that can easily be managed by a parent or other family member — like taking an oral medication or using an asthma inhaler — is not likely to qualify for the HCBA waiver. Here are some conditions that can qualify for the HCBA waiver:

  • A premature infant who comes home from the NICU with a need for oxygen.
  • A child with a craniofacial syndrome who has a tracheostomy to help them breathe.
  • A child who needs help breathing and uses a ventilator, BiPAP, APAP, or CPAP.
  • A child who has a kidney condition and uses at-home peritoneal dialysis.
  • A child who has a gastrointestinal condition and gets intravenous or enteral nutrition.
  • A child who has spina bifida and uses an ostomy or an invasive bowel care program.
  • A child who is paralyzed and either has or is at risk for pressure injuries due to their condition.
  • A child who has cancer and uses a nasogastric tube for nutrition.
  • A child who has a seizure disorder that is not well controlled with medication.

If you have questions about what conditions qualify, you can call the HCBA waiver agencies and ask for more information.

A child doesn’t qualify for the HCBA waiver just because they need an expensive medical treatment or medication. A child qualifies because they have an ongoing need for nursing level care at home. For example, a child who has cancer and who gets treatments in the hospital wouldn’t qualify based on the need for medical care in the hospital. But if the child had to go home with a nasogastric feeding tube for nutrition, they would qualify based on the need for nursing care at home.

A child does not need to have a developmental disability or be a Regional Center client to qualify for the HCBA waiver. The HCBA waiver looks at a child’s need for nursing care at home, not at the child’s developmental milestones. For example, a child who has a kidney condition and uses at-home peritoneal dialysis would qualify for the HCBA waiver because the child has a medical condition that requires nursing care at home.

Children who have medically complex disabilities often fall through the cracks because they can’t qualify for Regional Center services and parents aren’t told that the HCBA waiver exists. The Regional Centers are responsible for making sure people with developmental disabilities get the care they need, and they coordinate services for people. There isn’t a statewide organization or agency that is responsible for coordinating services for people who have physical disabilities or medical care needs, so people have to coordinate their own services.

What about Regional Center clients?

In general, the HCBS-DD waiver provides institutional deeming for children with developmental disabilities, and the HCBA waiver provides institutional deeming for children with medically intensive disabilities.

Most Regional Center clients who are children don’t need to enroll in the HCBA waiver in order to access care. Some children who have both developmental disabilities and medically intensive disabilities are enrolled in the HCBA waiver instead of the HCBS-DD waiver.

Federal rules state that a person can be enrolled in only one 1915(c) Medi-Cal waiver at a time. The reason for this rule is because 1915(c) waivers are supposed to provide a person with all of the support they need to live in the community instead of in an institution. The HCBA waiver, Self-Determination Program (SDP), and HCBS-DD Waiver for Regional Center clients are all 1915(c) waivers. The state has released guidance on the different services that are available through the HCBA and HCBS-DD waivers.

Under the Lanterman Act, Regional Center clients are entitled to receive Regional Center services even if they are not enrolled in the HCBS-DD waiver. That means that a Regional Center client can be enrolled in the HCBA waiver to access private duty nursing or WPCS without losing Regional Center services. The Department of Developmental Services has released guidance on how the HCBA waiver interacts with the HCBS-DD waiver.

In general, the Regional Centers are considered to be the “payer of last resort” for services. That means clients have to try to get services from “generic resources” that are available to them, including private insurance, Medi-Cal, or CCS before the Regional Center will pay for services The HCBA waiver is not considered to be a “generic resource” for Regional Center clients. That means the Regional Centers aren’t supposed to tell clients that they have to enroll in the HCBA waiver in order to get access to services that the Regional Center can provide.

Waiver Personal Care Services

Waiver Personal Care Services (WPCS) are provided through the HCBA waiver. WPCS pays caregivers to provide care. WPCS caregivers are hired and paid through the IHSS system.

Many families use WPCS care to fill in the gaps of the home nursing system. Due to low Medi-Cal reimbursement rates and the chronic shortage of nurses, families can’t always find nurses to cover all of their child’s care needs. Families can use a combination of IHSS and WPCS caregivers to take care of a child in cases where they can’t find a nurse. Families can mix and match to meet their needs.

A child who doesn’t use the HCBA waiver for institutional deeming can still apply and use the HCBA Waiver to access WPCS. Parents are responsible for training WPCS caregivers on how to take care of their child’s medical needs. WPCS caregivers earn the same rate as IHSS workers, which varies by county.

WPCS can pay parents and legal guardians for taking care of a minor child, but only in limited circumstances. The parent must be unable to work due to the child’s care needs, there must be no other caregiver available, and the child must be at risk for institutionalization if care is not provided. For very young children who need round-the-clock supervision for their medical care needs but who can’t qualify for very many IHSS hours because of IHSS rules that make it difficult for very young children to qualify, WPCS can fill in the gaps. WPCS services can also fill gaps for children receiving IHSS whose documented care needs on the IHSS Notice of Action exceed the IHSS monthly maximum of 283 hours.

A child needs to be using all of their authorized IHSS hours before they can be approved for WPCS. It can be confusing to hear that you have to apply for one program before another program can help you. People with disabilities who already have Medi-Cal usually have authorized hours from IHSS before they apply for the HCBA Waiver. Children who are using the HCBA Waiver for institutional deeming need the HCBA Waiver to access Medi-Cal in order to apply for IHSS. People in different situations apply for the programs in different orders. If this seems too confusing, don’t worry, the social worker at the waiver agency will understand the rules and point you in the right direction.

The HCBA waiver isn’t the only program that can pay caregivers. The HCBS-DD waiver can authorize personal attendant care for Regional Center clients. If a Regional Center client needs a caregiver who isn’t a nurse to take care of them due to their developmental disabilities, the Regional Center can authorize that kind of care. Every Regional Center has different policies on when they can authorize this kind of care, so contact your Regional Center worker for more information.

Private duty nursing services for young adults 21+

How does the HCBA waiver work for young adults who are aging out of the pediatric care system? For children aged 0-21, Medi-Cal pays for private duty nursing care through the EPSDT benefit, even for children enrolled on the HCBA waiver. EPSDT refers to Early Prevention, Screening, Detection, and Treatment — a set of rules from the federal government that requires states to cover more services for children than they do for adults. This means that children with Medi-Cal coverage don’t usually have to enroll in any special programs like the HCBA waiver to access nursing care at home.

The HCBA waiver is the only Medi-Cal program that pays for private duty nursing for adults over age 21. Private duty nursing is not a covered benefit for adult Medi-Cal beneficiaries who are not enrolled in the HCBA waiver. Although adults can enroll on the HCBA waiver, there is usually an extensive wait list, and priority goes to children under age 21, people waiting to move from medical facilities into the community, and people waiting to transition from other HCBS waivers because their needs are no longer being met. If a young adult living in the community is not fully enrolled in the HCBA waiver by six months after their 21st birthday, they will lose priority status on the wait list, and until they are enrolled there is no funding source to pay for home nursing care.

In some cases, the Regional Center system has authorized payments for private duty nursing services for young adults on the HCBA waiver waitlist. If your young adult is a Regional Center client and is still on the HCBA waiver waitlist as their twenty-first birthday approaches, ask for an emergency IPP meeting with the Regional Center. A young adult who has been receiving home nursing care and suddenly loses access to that care is at extreme risk for institutionalization. The Regional Center has the ability to authorize payments for private duty nursing if the service is necessary to keep a client safe at home.

For young adults who have medically intensive disabilities who turn 21 while still on the HCBA waiver waitlist, and who are not eligible for Regional Center services, there are no easy solutions. If the young adult is enrolled in Enhanced Case Management with a Medi-Cal Managed Care plan, contact the case manager and request help. Medi-Cal MCOs have no legal obligation to cover private duty nursing care for adults, but if you make a case that the only alternative is placement in a nursing facility, they may be willing to authorize care on a time-limited basis to avoid paying for institutional care until a waiver slot becomes available.

Why is there a waiting list for the HCBA waiver?

Medicaid waivers are special programs where states are allowed to have more flexibility in the way they spend money to purchase medical care and services. The Medicaid waiver programs are targeted to help people with disabilities who would otherwise have to live in institutions live at home instead. Medicaid automatically covers care that happens in hospitals and institutions but requires people to enroll in special programs to access care at home.

Advocates call this the “institutional bias” in Medicaid spending. If a waiver program is at capacity, new applications are put on a waitlist. Waitlists are a major reason people with disabilities have a hard time accessing care at home — most other states have lengthy waiting lists for these programs.

California has two large waiver programs that do not limit how many people can participate. In Home Supportive Services (IHSS) is a 1915(j) waiver program that pays for caregivers to take care of people in their own homes. There is no waitlist for IHSS. California does not put a limit on how many people can get IHSS — any Medi-Cal recipients who qualify for care can apply for the program. About 600,000 Californians are enrolled in the IHSS program.

The HCBS-DD waiver administered by the Regional Center system for people with developmental disabilities does not limit how many people can enroll. There is no waitlist for the HCBS-DD waiver. Any Regional Center client who qualifies for the waiver can enroll. In addition, under the Lanterman Act, Regional Centers are obligated to provide services to people with developmental disabilities even if they do not receive Medi-Cal or the HCBS-DD waiver. About 160,000 people are enrolled in the HCBS-DD waiver.

California does limit how many people can enroll in the HCBA waiver. As of 2024, the limit is 10,774 people. The capacity will increase to 12,574 in 2025, 14,374 in 2026, and 16,174 in 2027. As of February 2024 there were 4,762 people on the HCBA waiver waitlist. The state publishes updated information on the HCBA Waiver waitlist.

How does the HCBA waiver waitlist work?

As of today, new applications for the HCBA waiver are being put on a waitlist. If your child qualifies for the HCBA waiver, you should still apply, but be aware that they will not be able to enroll immediately.

If your child is in the NICU or PICU, you should send the application as soon as the care team knows your child will have a qualifying condition. Hospitals have a saying: the discharge planning starts at admission. If a child has a feeding tube or breathing tube placed, you don’t need to wait until the child is ready to leave the hospital. It can take several months for a child to enroll in the HCBA waiver, so it makes sense to send in the application as soon as possible.

Some applications — including applications for children and young adults aging out of the pediatric care system — have priority over others. Knowing the number of people on the waitlist doesn’t tell the whole story, because applications are screened to see whether the person applying meets any of the priority groups. The following groups have priority for enrollment in the HCBA waiver:

  • Individuals transitioning from similar HCBS waivers to the HCBA waiver because their skilled care needs and level of care requirements can no longer be met. (This category refers to adults who are not Regional Center clients.)

  • Individuals under 21 years of age, prioritized as follows:

    • Individuals imminently aging out of EPSDT, or who aged out of EPSDT within the previous 6 months, who have been receiving private duty nursing (PDN) at the time they aged out of EPSDT
    • Individuals that require institutional deeming to access Medi-Cal
    • Individuals under 21 years of age who do not meet criteria listed above
  • Individuals who have been residing in a skilled nursing or acute care facility for at least 60 days at the time the HCBA waiver application is submitted.
  • Individuals residing in the community at the time of submission of the HCBA waiver application.

Note that special rules apply to dependent children of active-duty military service members if the family moves in or out of state while the child is enrolled in the waiver or on the waitlist. Refer to WIC 14132.993 for further information.

Within each category of priority, applications are handled in the order they are received. The Waiver Agency should be able to confirm that an application is on the waitlist and whether it has been classified as being a member of a priority group. It is very difficult to predict how long it will take for an application to come off the waitlist because the number of applications in each category is constantly in flux.

How can children who are on the HCBA waiver waitlist access nursing care at home?

  • Children who have full scope Medi-Cal based on family income do not need to enroll in the HCBA waiver to access nursing care at home. Any child aged 0-21 enrolled in Medi-Cal who needs home nursing qualifies to get it without being enrolled in the HCBA waiver.

  • Regional Centers use the term “Status 2” to refer to clients who they have classified as having a lifelong developmental disability that constitutes a substantial disability under the Lanterman Act. Generally, this applies to children who are older than 3 who continue receiving Regional Center services after they complete their early intervention program. Children who are Status 2 Regional Center clients who need institutional deeming can use the HCBS-DD waiver to get Medi-Cal eligibility — there is no waiting list to enroll in the HCBS-DD waiver. The HCBA enrollment process can take 6 months or more,the HCBS-DD waiver enrollment process can happen in a few days (in a time sensitive situation).

  • Children aged 0-4 who are classified as Regional Center “early intervention” or “provisional eligibility” clients can ask their Regional Center worker for an emergency IPP meeting to discuss changing the child’s eligibility to “Status 2” in order to enroll in the HCBS-DD waiver. The process generally involves a review of the child’s medical records by the Regional Center’s medical director to establish 1) whether the child meets eligibility requirements for ongoing Regional Center services after age 3 (or after age 4 if the child has provisional eligibility), and 2) if the child is under age 3, whether they have at least two qualifying health conditions or medical care needs in addition to their developmental disability. Children qualify for lifelong Regional Center services based on developmental disabilities and not based on their medical condition. Children who have a diagnosis that is commonly known to cause developmental disabilities are more likely to qualify for an early switch to Status 2 than children who have a rare or undiagnosed syndrome. Children who have conditions that are solely physical in nature will not qualify. However, even if the child is switched to Status 2, the HCBS-DD waiver requires additional medical needs for children under age 3. For example, an infant with a diagnosis of Down syndrome who has a tracheostomy may be able to enroll on the HCBS-DD waiver, but a baby who has a tracheostomy due to a physical condition like paralyzed vocal cords will not, nor will a toddler with a diagnosed developmental disability but no specific medical care needs.

  • Children with disabilities who spend more than 30 days in an inpatient hospital are eligible for Medi-Cal under institutional Medicaid rules, even if their parents’ income is over the limit. For a child who will be in the hospital for several months (such as a baby projected to have a long NICU stay), it’s important to apply for institutional Medi-Cal as soon as possible. The application process involves applying for Supplemental Security Income (SSI) disability and can take several months. If a child has this type of Medi-Cal eligibility, the child remains eligible after discharge until the state can reassess the family’s eligibility. This is a stop-gap solution that does not solve the entire problem, but it can provide a few months of eligibility with the hope that the child’s HCBA waiver application will be approved quickly. However, this doesn’t work if the hospital waits until a few weeks before the child is going to be discharged to start the SSI paperwork.

  • For some medically fragile children who have family income over the limit for Medi-Cal and can’t qualify for Regional Center services, the HCBA waiver is the only way to access institutional deeming for Medi-Cal eligibility. You can read more about these families here. Some families may be able to bring their child home without access to nursing at home. Other families may not be able to do this, which means the child will either stay in the hospital or be transferred to a pediatric subacute facility (a special nursing home for children).

How to apply for the HCBA waiver

The first step in applying for the HCBA waiver is to learn that it exists. Congratulations, you’ve made it this far! In a perfect world, families would be told about the HCBA waiver as soon as their child is diagnosed with a medical condition that requires ongoing care at home. But our medical care system is complicated, and information for children who have medically intensive disabilities sometimes falls through the cracks. Sometimes hospitals don’t refer families to the HCBA waiver because they don’t know it exists, they don’t know the rules on who qualifies, or they’ve heard there is a waitlist.

Most of the people who are enrolled in the HCBA Waiver are adults. That means that most of the information available about the HCBA Waiver is geared for an adult audience.

Compounding the difficulty, families who have children with medically intensive disabilities are frequently sent to the wrong places. County Medi-Cal offices don’t process HCBA waiver applications and frequently don’t know what the HCBA waiver is. Regional Centers don’t process HCBA waiver applications and don’t provide services to children whose disabilities are solely physical in nature. California Children’s Services will help children with medically intensive disabilities who have Medi-Cal eligibility, or if their family spends more than 20% of their income on the child’s medical expenses. CCS workers frequently tells families about their own rules for higher income families, but not about the HCBA Waiver that would give the child Medi-Cal eligibility without having to spend 20% of the family income on medical expenses.

In addition, families don’t just have to apply for all these programs, they have to apply for everything in the right order. In general, adults apply for Medi-Cal first, then apply for the HCBA waiver. For children who need institutional deeming, the order is reversed - children apply for the HCBA waiver first, wait for approval, then apply for Medi-Cal.

The HCBA waiver is administered by Waiver Agencies that serve geographic regions — much like the Regional Center system. Waiver Agencies are assigned by county, except in Los Angeles and Orange County, where Waiver Agencies are assigned by zip codes. You cannot apply for the HCBA waiver through the state’s online benefits application or at county Medi-Cal offices; you can apply only through Waiver Agencies. Find your Waiver Agency here.

Alpine, Imperial, Inyo, Marin, Mendocino, Mono, and Napa counties do not have an assigned Waiver Agency. If you live in these counties, apply for the HCBA waiver by sending your application to the Department of Health Care Services (DHCS) by mail, fax, or email (contact information is included on the last page of the application).

Start with the HCBA waiver application, which can be found here. The application asks for information about the person applying for the waiver and their medical care needs. There are checkboxes for common medical care needs like oxygen, suctioning, tube feeding, and breathing machines. If the person applying for the waiver has more care needs than are listed, include them in the blank boxes or attach a separate page.

Things to keep in mind when you apply:

  • If you are applying for a child who qualifies for priority on the waitlist, write the category that applies on the application. There isn’t a space for it, so write it in the margins or write it on a separate page and staple it to the application. The three categories are young adults who are 20.5 years old (within six months of aging out of EPSDT), children who need institutional deeming, and children under 21 generally. The waiver agencies screen applications to see whether they qualify for priority placement on the waiting list — you want to make it easy for them to see that the application qualifies.
  • Many of the Waiver Agencies seem like they’re focused on providing care for elderly people and not children. Don’t worry – you’re still in the right place. Most of the people enrolled in the HCBA waiver are adults; very few children need to enroll in the HCBA waiver. The state used to have two separate programs, one for children and one for adults. When they merged the two programs, it resulted in elder care nonprofits getting the contract to handle pediatric cases. The Waiver Agencies know how to handle the pediatric cases, even if their websites mostly talk about services for adults.
  • The HCBA waiver application says you need to be eligible for Medi-Cal to apply for the HCBA waiver. That rule applies to most adults; it does not apply to children. Children who need the HCBA waiver for institutional deeming apply for the HCBA waiver, then apply for Medi-Cal.
  • It is very important to send your application to the correct Waiver Agency. If your application is sent to the wrong agency, it may get lost or delayed.
    • If you are sending the application by mail, send the application via certified mail with a return receipt.
    • If you are sending the application by email, keep a copy of your sent email and any email the agency sends in response.
    • If you are sending the application by fax, keep a copy of the confirmation and anything the agency sends in response.
  • Contact the Waiver Agency about a week after you send in the application to confirm that they have received it.
  • The Waiver Agency won’t be able to tell you your place on the waitlist, but they can confirm that your application has been received. They can also confirm whether your application has been classified as a priority in their tracking system.
  • If you move or if your contact information changes while you’re on the waitlist, make sure you let the Waiver Agency know.
  • If you move into the assigned area for a different Waiver Agency than the one you originally applied with, talk to both Waiver Agencies to make sure your application is transferred to the new agency.

What does the HCBA waiver enrollment process look like?

When your child’s application comes off the waitlist, the Waiver Agency will reach out to you, usually by phone. A social worker will ask questions about your child’s diagnosis and care needs and about your family’s living situation. The questions they ask about your home and who lives in it are to make sure the child is in a stable location. Some of the questions might seem strange — that happens because the HCBA waiver includes children and adults. Some of the questions don’t really apply to children, but the social worker is filling out paperwork for the state so they have to ask.

A registered nurse will put together a document called a “Plan of Treatment.” This document lists all of the different things that are involved in your child’s care — medical treatments, nursing care, other caregivers, equipment, accessibility, etc. Once your child’s doctor signs the Plan of Treatment, the paperwork is sent to the state for final approval.

The process of actually getting enrolled in the HCBA waiver can take several months.

For adults, the HCBA waiver directly pays for home nursing. For children, the HCBA waiver doesn’t directly pay for home nursing — the HCBA waiver gives the child Medi-Cal eligibility, then Medi-Cal pays for nursing.

Applying for Medi-Cal once you’re enrolled in the HCBA waiver

To receive Medi-Cal once your child has been enrolled in the HCBA waiver, you can apply through the state’s online application portal. The Medi-Cal system requires you to enter information for every member of the household, even if you are applying for only one child.

When you provide the child’s information, make sure to answer “yes” to the following two questions:

  • Does this person have a physical, mental, emotional, or developmental disability?
  • Does this person need help with long-term care or home and community-based services?

Answering “yes” to those questions tells the county Medi-Cal eligibility worker to ask for more information about the child’s care needs.

The Waiver Agency will send the county an institutional deeming letter that tells the county Medi-Cal worker that the child is enrolled in the HCBA waiver. In a best case scenario, the county eligibility worker will read the institutional deeming letter, enter the eligibility code “6X” in their computer system, and activate the child’s Medi-Cal eligibility. County Medi-Cal workers use the code “6V” for the HCBS-DD Waivers. If a person switches from one waiver to another, the county eligibility switches the code in their system.

What to do if the Medi-Cal enrollment process doesn’t work smoothly

HCBA is a very small program, and county Medi-Cal workers may not know what to do with the institutional deeming letter that the Waiver Agency sent them. You may have to educate the county workers about the program in order to get your child’s application processed. It helps to explain that the HCBA waiver is like the Regional Center waiver but uses a different code — it’s more likely that eligibility workers have heard of the Regional Center waiver and know how to handle those applications. If the first person you talk to can’t help, ask to speak to a supervisor in the “Aged, Blind, and Disabled” department. As mentioned, the HCBA waiver is a small program, and lots of families of kids who qualify for it don’t know about it. County Medi-Cal workers want to be able to help people — when you advocate for your child, you’re also giving those workers a tool they can use to help other families in the future.

This process will repeat at your child’s yearly Medi-Cal eligibility redetermination. The Waiver Agency will generate an institutional deeming letter every year, and you’ll send it in with the usual paperwork. Waiver Agencies usually send the letter directly to the county, you should request that they also send you a copy that you can include with your renewal paperwork. (This happens annually with the HCBS-DD program as well, only the Regional Center generates the letter that needs to be submitted to Medi-Cal with the recertification paperwork.) Eventually your child’s file will have case notes that tell the eligibility worker how to handle HCBA institutional deeming, but it’s good to call and make sure that the county received the paperwork and entered it in the system.

Once you’re enrolled in Medi-Cal, our Medi-Cal terms and services glossary can give you a better idea of what services your Medi-Cal plan might cover. For more on making the most of Medi-Cal, see our article here.

Contents


Overview

HCBA: overview

Who qualifies for the HCBA waiver?

The Katie Beckett story

What does “institutional deeming” mean?

Institutional deeming in California

Medi-Cal and qualifying for the HCBA waiver

Qualifying conditions for the HCBA waiver

What about Regional Center clients?

Waiver Personal Care Services

Private duty nursing services for young adults 21+

Why is there a waiting list for the HCBA waiver?

How to apply for the HCBA waiver

What does the HCBA waiver enrollment process look like?

Applying for Medi-Cal once you’re enrolled in the HCBA waiver

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Author

Jennifer MclellandWriter

Jenny McLelland is a parent advocate from Fresno, California. Jenny has a 13-year-old son who is tracheostomy and ventilator dependent. Her main advocacy focus is on issues that affect medically fragile, technology dependent children and adults. Her advocacy goals are to make sure disabled people can get the care they need at home and not in institutions. At a big-picture level, that means advocating for Medi-Cal and the Affordable Care Act. At a detailed level, that means making sure the programs that provide access medical care and nursing care at home work smoothly so that people can get the care they need. Jenny writes on issues that affect children and youth with special health care needs for the California Health Report.

Reviewed by:

  • Adelina Sarkisyan, Undivided Writer and Editor
  • Cathleen Small, Editor

Contributors:

  • Lisa Concoff Cronbeck, Undivided Public Benefits Specialist

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