Recommendations For Advocates And Policymakers
After talking to state officials and family members in the states with
the waiver, we have developed a set of recommendations for drafting a
waiver designed to promote keeping children in their homes and communities
and minimize the incidence of custody relinquishment.
1. Form a task force to give input on drafting and implementing a
waiver application.
In Kansas, a task force was formed that included families, advocates,
providers, state policymakers and others to work on a series of issues.
At first the task force worked on the waiver application, defining what
services would be included in the waiver. It continued to operate and
give input after implementation. The benefit of forming a task force is
that it provides a forum for identifying a meaningful package of services,
gaining consensus and building widespread support for the waiver.
2. Choose an expansive array of services to add to the state’s
Medicaid plan for this population.
Each state that has a home- and community-based waiver has added services
to the state’s array. It is important to include a broad array of
services in order to be able to achieve the waiver’s goal of keeping
the child in the community.
- Kansas added wraparound facilitation, parent support and training,
respite care and independent-living services.
- Vermont added flexible supports, including respite care, home supports,
family supports, community-social supports and crisis supports, and
transportation, environmental modification and adaptive equipment.
- New York added individualized care coordination, respite care, skill
building, intensive in-home services, crisis-response services and family-support
services.
3. Make sure the amount of money allocated for home- and community-based
services is adequate.
Under Medicaid law, services provided under the waiver must be cost-neutral
to the Medicaid program. That is, on average it cannot cost more to keep
a child in the community than in a psychiatric hospital. But the three
states operating the waiver are far below cost-neutrality in their expenses;
their waivers cost approximately half as much as hospital costs. As a
result, there is lot of leeway and, as long as expenses stay below the
cost-neutrality cap states should not shortchange the community system.
If the community system does not have enough resources, then children
will not get the services they need to stay at home. Some of the states
with waivers have experienced difficulty in recruiting and maintaining
an adequate number of behavioral health aides and respite workers. If
the waiver is underfunded, this becomes more of a problem.
4. Ensure that children who need help can get access to the waiver.
States have a great deal of latitude when it comes to developing clinical
criteria for when children will meet “a hospital level of care”
and thus qualify for the waiver. Advocates and policymakers should ensure
that the criteria selected will allow children who are being inappropriately
served to qualify for home-and community-based services, particularly
children who would otherwise come into custody through child welfare or
juvenile justice.
5. Allow children to access services through the waiver long enough
to remain stable.
Some advocates have been concerned that children whose condition improves
while on the waiver risk losing the services because they are no longer
deemed to need the hospital level of care. Once the waiver services are
removed, the child will have to deteriorate again to get help, leading
to an unhealthy and illogical health care system. Accordingly, advocates
and states should ensure that the waiver does not remove children too
quickly from the program and that adequate planning and implementation
of services takes place when a child is ready to transition.
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