A Rationing System: Waiting Lists for Medicaid Waiver Services in Virginia

The author, Juliet Hiznay, is a special education advocate and attorney in private practice in Northern Virginia. For information about her practice, visit http://jdhiznay.com/ 

All this talk in the national press about Medicare and Medicaid has me thinking about the state of things in Virginia for children with disabilities as it stands today. A short preview is: the state of things is appalling. We don’t have a rational system in the Commonwealth of Virginia, we have a rationing system. Yes, we are rationing care today.

To make sure everyone knows what I am talking about, Medicare is a government program that is for older residents who have paid in for the benefit, have reached a certain age, and apply for the program. By contrast, Medicaid is a program that provides healthcare assistance to those who need it, either because the person qualifies due to low income or due to a disabling condition. Individuals also have to apply for the program. Medicare is not available to children with disabilities. Medicaid is supposed to be available for children and adults with disabilities, if they qualify. Those who do not meet the income limitations to qualify for Medicaid may still qualify for “Medicaid Waiver Services.” The “waiver” aspect of the program allows caregivers to continue to work and earn money for their families so they do not need to go bankrupt or sever their parental rights to provide a dependent child (or adult child) with the care that individual needs.

In Virginia, there are two types of Medicaid Waivers that apply to children with disabilities. One is for children with intellectual disabilities or “ID Waiver.” The other is for children with developmental delays or “DD Waiver.” Children who are on the autism spectrum may qualify under the DD Waiver if they do not already qualify for an ID Waiver. Unlike in other states, there is no “Autism Waiver.” Theoretically, through the federal government matching program, these Medicaid Waivers were supposed to meet the needs of all children with disabilities who qualified. Virginia policymakers have seen fit to ignore the needs of thousands of children and their families who have a need for assistance today.

The most recent statistics available from the Virginia Department of Medical Assistance Services show that, as of June 2012, the ID Waiver waitlist includes 6,255 individuals and the DD Waiver waitlist included 1,073 individuals. As of June 2012, 7,338 Virginians who qualify for Medicaid Waiver Services are not receiving those services. http://www.dmas.virginia.gov/Content_atchs/ltc/ltc_wsr_stats.pdf And the numbers are growing. Of the 7,338+ individuals who qualify (but are not receiving services), a certain number are placed on “urgent lists” often due to the age or the health of the family caregiver. According to the Community Services Board, in Fairfax County alone, as of August 2012, there were 493 individuals on the urgent portion of the waiting list for the ID Waiver. Another approximately 400 had qualified for the ID Waiver but were considered “non-urgent.”

To give some flavor to this, consider the following, alarmingly common, situation for children with severe autism on the waiting list: a child who is mostly non-verbal, who cannot safely navigate the streets, who wanders off without warning or permission (elopement), who may become aggressive with others when upset or overstimulated, who may not have normal sleep habits, and who may be too large and strong for caregivers to control physically. Such a child is an individual who desperately needs therapies to address behavior problems. Such a family is one under constant stress, who must be vigilant at all hours of the day, who is locking the doors to the house with a key from the inside and hiding the key, who is locking the refrigerator and the knives and scissors, and who may be experiencing physical injuries inflicted by their own disabled child. There are families with individuals on the waiting list today that fit this description. I know this because I have spoken with some of these families. Sadly, in many cases, these are adult children. http://www.wjla.com/articles/2012/02/virginia-medicaid-waiver-wait-list-continues-to-grow-72720.html

The longer these situations persist, the worse the outcomes for all. Imagine the mental health, physical health and financial impact on such a family. Imagine the pain of the individual who is disabled.

So, are block grants for Medicaid a good idea for children with disabilities in the Commonwealth of Virginia? Because Virginia is doing such a great job of serving our most vulnerable citizens today? Forgive me if I am skeptical.

Published October 16, 2012; All Rights Reserved Juliet D. Hiznay