The lay of the land
in disability-rights world
A year ago, a new advocacy group for North Carolinians with disabilities was launched. Over the past 12 months, the staff of the new organization — Disability Rights North Carolina — has learned a lot.
Not only did we learn mundane things like how to use the new database and fill out timesheets, we had to develop and then learn critical policies and protocols related to working with clients. In short, we had to become experts in the complexities of the systems designed to serve North Carolinians with disabilities.
DRNC has matured in our first year. We understand our role as advocate and we have a better understanding of the challenge before us. And, to be sure, it is an enormous challenge.
The current statewide system of care for people with disabilities is badly flawed at both ends of the spectrum - from facility to community. State-operated facilities and so-called “local management entities” receive little direction from the Department of Health and Human Services. The department issues guidance but is seldom directive about the services it is required to oversee. This results in several critical flaws, which undermine the current process of system transformation.
First, there is little or no consistency in policy, procedure or culture among the state-operated facilities. The much-publicized challenges of merging two state hospitals (Dix and Umstead) into Central Regional Hospital demonstrate both this lack of consistency and the need to have a state-driven system instead of autonomous facilities.
Second, the department does not provide clear and concise leadership to LMEs regarding the core functions each must provide. While the department encourages “best practices,” it does not require them. While this allows for flexibility, it thwarts minimum standards for quality of services. As the state moves toward single-stream (i.e., LME-controlled) funding, enforceable standards will be necessary to ensure equal services among LMEs.
Third, the state has weakened its enforcement and oversight of existing administrative rules and regulations. It appears to take the position that it has little control and thus little responsibility over the provision of services across the state. This abdication of responsibility has led to costly and dangerous situations. Broughton Hospital continues to lack the necessary certification for Medicaid reimbursement at a cost of millions of state taxpayer dollars. Inappropriate and potentially deadly restraint practices persist in both public and private facilities. (In fairness, since Cherry Hospital installed cameras capturing improper restraint, that administration has taken appropriate action.) Poor coordination of discharge planning has resulted in the deaths of several patients.
Fourth, the state has developed an over-reliance on Medicaid funding to pay for services — especially for long-term community-based services. Medicaid funding alone will never be sufficient. Medicaid dollars by definition target acute situations. For many people with disabilities living successfully in the community necessitates long-term services and supports in the community. Those services need to be covered by state dollars and not dependent on Medicaid reimbursement.
In addition to the obvious harm to consumers, the above shortcomings also have damaged the credibility of department staff. This damaged credibility is palpable in the recent recommendations of a legislative oversight committee impaneled by the General Assembly. Unfortunately, many of the committee’s recommendations are so specific that in attempting to fix the problems of system reform the General Assembly may restrict potential solutions.
Going forward, the General Assembly must allocate sufficient resources and demand clear and concise accountability mechanisms from the Department. The department, in turn, must accept its responsibility to ensure and enforce the provision of statewide services. LMEs must have the tools necessary to respond to the need in their catchment areas - including the ability to hold providers accountable — and to be accountable to the department. Finally, providers must have needed flexibility to respond to the individual needs of clients.
Unfortunately, this state of affairs is not much different from the way things were in 2001 when the state adopted a systemic overhaul known as the Blueprint for Change. What is different now (or at least clearer) is that there is no longer any doubt about who bears responsibility for the systems reform that can bring about the improved services that are necessary. This responsibility lies squarely on the shoulders of the state Departmental of Health and Human Services. Making sure that the department lives up to this responsibility will be one of DRNC’s main objectives in the months and years ahead.