Jeneva Burroughs Stone is a member of Little Lobbyists.
I attended the Disability Integration Act reintroduction ceremony as a member of Little Lobbyists, a parent-led organization of families with children with complex medical needs and disabilities. As Elena Hung , the co-founder of Little Lobbyists, said at the ceremony, “We want to make sure [our children] have the support in place to live the best lives and maximize their independence in the community and be here with us and not in institutions far away.”
That statement hit me hard, because my husband and I have been placed in a no-win situation by Maryland. Now, our financial future is pitted against our love for our son.
The Disability Integration Act would compel states to fully integrate adults with disabilities into their communities. Now, conflicts among agencies often pit the strained finances of parents with disabled adult children against the legal might of states that prefer an easy default: keeping disabled people locked away.
Senate Minority Leader Charles E. Schumer (D-N.Y.), the bill’s Senate sponsor, said, “Right now a person who needs long-term services and support has a very limited choice where they can receive services, and it is irrational and expensive. People with disabilities are often denied the choice to stay at home. And get services. It means people are placed in institutional facilities far away from their families.” Schumer was referencing Medicaid’s state-federal long-term services and supports waivers, or LTSS waivers, for short.
This is the case in Maryland, where Hung, whose daughter is very young, and my 21-year-old son and I all live. My son, Robert, has been granted an LTSS waiver by Maryland; however, he requires skilled nursing care, which is provided by another state Medicaid program, REM, or the Rare and Expensive Case Management Program.
Robert left the school system last month — that is, he is officially an adult — and I have been unable to persuade state agencies in Maryland to work together to provide the support my son requires under his LTSS waiver to keep him active in his community and to keep him at home. I have asked for help from my state legislators and from my U.S. Senate and House representatives.
The problem isn’t the state’s Developmental Disabilities Administration, which assesses REM waivers, nor the state legislature. It’s the Maryland Division of Nursing Services, which processes applications for skilled nursing services, and the Maryland attorney general’s office, which reflexively backs up the nursing division’s internal guidelines that keep private-duty nursing hours at a minimum for Maryland families. In effect, the attorney general’s office is pitting the implementation of one Medicaid program against another at the expense of people such as my son.
I have been reading Maryland’s regulations on the REM program and have discovered that the state has no nursing regulations that govern the needs of adult Maryland residents with disabilities and complex medical needs. That discovery shocked me, as I realized the state essentially sees people with disabilities as minors in perpetuity. As a result, Maryland’s policies are in conflict with the Supreme Court’s Olmstead v. L.C. decision, which upholds civil rights for disabled adults.
In Maryland, the attorney general is an elected position, so I thought I could write to him to express my dismay. I received a letter in return from an assistant attorney general that did not address my query about my son’s civil rights, but simply went over the legal processes of application, denial and appeal.
The state attorney general’s office must sort through the competing demands of these two Medicaid programs it adjudicates and ensure that the civil rights of Marylanders with disabilities are protected, an effort that would save the state critical funds, as all studies point to the low cost of home versus institutional care.
Meanwhile, I continue doing the unpaid labor of coordinating my son’s medical and social services, which requires 15 to 40 hours per week. My work keeps my son out of the hospital and saves Maryland hundreds of thousands of dollars per year.
Maryland is shirking its duty to disabled adults, forcing parents to shoulder state-level responsibilities or commit their children to nursing homes. My family is dedicated to our son; however, after 20 years of inequality in Maryland, we are at a breaking point. I am devoting my remaining resources to advocacy to ensure that families who come after me are not destroyed by unjust state policies and regulations.