Loud and Clear: A Special Needs Conversation

Katie Beckett Waiver Brings Home Care to Kids with Serious Disabilities

By Tara Anne Pleat, Esq.

In many states, the Medicaid program can generally be seen as having a strong institutional bias when it comes to coverage of long-term care, forcing many families to place loved ones in skilled care facilities or similar institutional settings, despite longstanding efforts to serve individuals with disabilities in mainstream settings. As reported in a recent SNA blog post, even when there are waiver programs in place to provide community-based services, waiting lists tend to be daunting. The “Katie Beckett Medicaid Waiver,” which has been enacted in some form in 24 states, provides an alternative for many individuals under 19 who have serious conditions related to their disabilities which, but for the Katie Beckett Waiver, might cause them to be placed in an institutional setting.

For those meeting the requirements, Katie Beckett Medicaid Waivers cover “institutional level” care in a home setting when it would cost no more than a nursing home or hospital. I have never encountered a situation in which the cost of home care became a disqualifying factor, although I’ve seen instances where medically necessary treatment couldn’t be adequately delivered outside a nursing home or other institutional setting, typically based on the physical (rural) location of the family. Financial eligibility is based only on the child’s income and assets, without regard for the parents’ financial status. Unlike Home and Community- Based Services (HCBS) waiver programs, states cannot limit the number of “Katie Beckett” participants, so there are no waiting lists.

Among the states that have implemented this waiver, the definition of “institutional level of care” differs, and as is the case with many programs that have the “institutional level or care requirement,” we have found that it can be difficult to determine who is medically eligible. The precise services available differ by state, as well. Some programs even include respite services, enabling family members to run errands or take needed breaks while skilled professionals watch over their child.

The advantages to home care are significant. Most notably, home care keeps families intact, enabling a child with special needs to live alongside loved ones who are usually far more attuned to their individual needs than institutional caregivers can be. Therapists and other professionals who serve them often develop close, long-lasting relationships with the entire family, contributing to a tight circle of support.

Needing “institution-level care” doesn’t necessarily mean a child can’t participate in community activities, so living at home presents greater opportunities for social inclusion. In fact, Katie Beckett, for whom the waiver is named, eventually attended college, lived in her own apartment and became an influential self-advocate.

The waiver originated in the early 1980s, when Katie Beckett’s parents fought to overturn a Medicaid regulation that would have forced her into a nursing home. After she was hospitalized for several years due to encephalitis, her doctors determined that she could be treated at home, given appropriate supports. By that time, her parents’ personal insurance had been tapped out and, given their financial resources, Medicaid would only cover institution-based treatment – even though the cost would be six times that of home care.

Katie’s mother argued that this was bad policy, and the story eventually reached President Reagan, who agreed and waived the Medicaid rule on a one-time basis. Congress subsequently passed the Katie Beckett Waiver, making it optional for states to make the same coverage available to others.

Since the eighties, the Katie Beckett Waiver has benefited over half a million children. On the other hand, state-by-state differences in availability, eligibility guidelines and services can be confusing. Even if a state doesn’t offer the Katie Beckett Waiver, it is possible that the state may have another Medicaid-funded program that can help provide needed services in the home, keeping the family unit intact. Families may find it helpful to consult a special needs attorney in order to evaluate their options.

Posted: February 17th, 2016 | 7 Comments »

7 responses to “Katie Beckett Waiver Brings Home Care to Kids with Serious Disabilities”

  1. Albert Baker II says:

    I’m really hoping I can get in contact with someone so that I can further understand what my options are for my child with special needs.

    • Hi Albert,
      I just happen to be looking at this web site and saw your question. Has anyone been able to answer? I am happy to try, if I can. Please feel free to e-mail me (lcauwels@bayada.com), if I can’t answer your question directly, perhaps I can connect you with someone who can.

      Sincerely,
      Lauren Cauwels, RN
      Bayada Pediatrics

    • Darlene says:

      Good luck Albert. We are NOTHING to this country. They make you feel ashamed and guilty if you are disabled. Your questioned like your a criminal. Like your trying to get something for nothing. I wish. I hope you are one of the lucky ones who comes across someone in the “System” who genuinely cares about you. They are RARE, believe me.
      God Bless

  2. Debra Baker says:

    Hello my email is not active please call me at 605-939-5390 I’m in need off emergency help for Daniel Oliver at the Pennington county jail and fall river county jail that will not accommodate him with medical services or treatment needed for his own mental illness and learning disabilities along with other disabilities he has had all his life and he us having seizures no one will help him call me please Debra Baker his mother

  3. Chupacabras says:

    When using the waiver program approach, should states add assisted living as a new service to an existing waiver program or implement it under a separate waiver program? From one perspective, adding to an existing waiver program is simple and minimizes reporting and tracking requirements. However, advocates for home and community services may perceive the addition of assisted living to the list of waiver services already covered as increased competition for a limited number of slots available for home services more generally. Coverage under a separate waiver program may be a better approach, not only for this reason but also because it enables a state to test the demand for and cost-effectiveness of assisted living

  4. Darlene says:

    I have MS. My 13 year old daughter is disabled. I am married and his income is too high to get any help. We live paycheck to paycheck. I am so depressed I cant handle it anymore. They deliberately make things too complicated so no one even tries to get help. Don’t they understand that the people trying to figure out all of these rules are disabled and have a hard time understanding things? Of coarse they do. They treat you like crap, like your a burden. This country is a joke. They complain that people cheat the system? These people are healthy, sharp people that can understand all of this, so they are the ones who can benefit, not the truly disabled. If I could afford a lawyer I wouldn’t be on this post. Like people with disabilities have piles of money laying around, NO we have NONE, and NO support.

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