Opening Doors — The Katie Beckett Medicaid Waiver

The bittersweet legacy of Katie Beckett
The plight of Katie Beckett, whose family fought for her to receive needed complex medical care at home rather than in an institution, focused our government’s attention on the rigid Medicaid regulations that prevailed in the 1980s. It was originally thought that the waiver program that bears her name would fill a need for at most 100 or 200 children nationwide. In fact, the Katie Beckett Waiver has enabled more than half a million children to grow up with improved health in their communities.
President Reagan, who championed the Becketts’ fight for change in home care reimbursement policy, noted an additional benefit of the waiver program. He estimated that the cost for Katie’s care at home was approximately one-sixth of the cost for her care in a hospital. That having been said, it must be pointed out that the individual states are not required, but are allowed at their option, to offer the benefits traditionally understood as the Katie Beckett Waiver.
Georgia, for example, is a state that offers a Katie Beckett Program. It extends Medicaid benefits for home care to children with complex medical needs, age 18 and under, even though those children would not otherwise be eligible for SSI benefits including Medicaid because of the parents’ income. (Until a child reaches age 18, the parents’ income is counted when a family applies for Supplemental Security Income (SSI) benefits for him/her.) To qualify for this waiver, it must be determined that the child can be appropriately care for at home and that the estimated cost for home care will not exceed the estimated cost of care within an institution.
In 1982, Congress expanded the original concept of the Katie Beckett Waiver when it created a new state plan option under the Tax Equity and Fiscal Responsibility Act (TEFRA). Like the Katie Beckett provision, the important feature of the TEFRA program is that children with complex medical care needs will not be denied Medicaid coverage even if their family income exceeds the Medicaid eligibility limit for their state. According to the Boston University School of Public Health, most states with Katie Beckett waivers at some point converted to TEFRA programs; currently 18 states and the District of Columbia have implemented this type of program.
Because of budgetary pressure, many states have sought other ways to provide Medicaid coverage to children in higher income families who need complex medical care. New Jersey, for example, does not at present have a Katie Beckett/TEFRA Waiver program although several state legislators have expressed interest in the concept. As a result, there are families in our community who must navigate a complicated patchwork of programs requiring significant up-front out-of-pocket expenses or a “spending down” of monthly income to qualify for needed coverage for their child. And these are not wealthy families. For some of these hard-working families, a slight cut in salary though not good for the family budget, at least secures Medicaid for their medically needy child.
Katie Beckett put a human face on a specific problem with our medical care reimbursement system. In this as in so many aspects of living with a disability, we’ve come a long way but still have so far to go.
DID YOU KNOW?
• The U.S. Department of Justice recently announced that it has extended the deadline for compliance of existing swimming pools with the 2010 ADA Standards for Accessible Design. These new standards were originally to go into effect on March 15, 2012, but that deadline was extended for 60 days. The new deadline for compliance is Jan. 31, 2013
• Bright Beacon, a partner of Exceptional Parent Magazine, is a free and secure social networking site for parents of children with medical needs. The site www.brightbeacon.org enables users to look for other families who have children with the same or similar medical conditions who live in the same geographic area. The website also has a marketplace where families can buy, sell, or trade medical equipment securely.
• Starting July 16, Karen Manette Bosna will be offering a new Yoga class for Seniors at the Branches Outreach Center in the Village Shoppes of Rio Grande. This Chair Yoga class, to be held on Mondays from 11 a.m. to noon, is open to all levels and is donation based. For information, call Karen at 609-827-8886
Pierson writes from the Cape May County Department of Aging and Disability Services