OPWDD SERVICES
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The Legislature must recognize that OPWDD services are absolutely critical in the lives of people with developmental disabilities.
OPWDD and its non-profit partner agencies provide a wide array of essential services for people with developmental disabilities: Tens of thousands of people enjoy healthy, safe, and fulfilling lives because of the OPWDD services they receive, whether residential, adult day, employment, family support, or clinical services.
Families were upset by the distressing stories in the press about OPWDD services. But they firmly believe these instances are anomalies, rare occurrences in a system serving 126,000 people. Most families know from experience that the vast majority of services are not just good: they are outstanding. Overwhelmingly, the direct support staff are competent and compassionate, performing extremely challenging work that most people would not be willing—or able—to do. Many families have seen their children flourish because of the exceptional services they receive and are profoundly grateful for the progress their children have made and for their productive lives—all possible only because of these services. Families cannot imagine what their children’s lives would be like without them!
DEVELOPMENT OF 24-HOUR RESIDENTIAL SERVICES
- The Legislature and OPWDD must make development of 24-hour residential services a top priority now and in the future, as the fiscal situation permits.
- OPWDD must develop a viable plan for addressing urgent residential needs.
Families with children still at home are sick with worry, especially those whose children cannot take care of themselves and will one day require round-the-clock residential services. There has been virtually no 24-hour residential development for several years, and future prospects are grim. True, the Executive Budget contains funding for about 250 new residential opportunities, but this is mostly for low-cost, not 24-hour, services. The budget also contains residential funding to move people out of institutions and to repatriate students from out-of-state schools. But for people still at home who require 24-hour services—especially those with complex (read “costly”) medical and behavioral needs—there are only crumbs.
New York State’s residential waiting list has reached an alarming 6,800 for people needing placement within 2 years! And new people enter the system every day. Manhattan alone has 521 people on the waiting list, including 41 on the brink of crisis: either the caregiver has passed away or become incapacitated, or the person is in a hospital with no place to be discharged to, or the person is homeless or at imminent risk of homelessness, or other equally horrendous situations. What will happen to these people?
The Executive Budget mistakenly relies on vacancies in existing residences to meet the need for 24-hour residential services. For some people, that may be a viable option, but for many others, it is no solution at all. For example, a person who uses a wheelchair cannot move into a home with stairs; a person with aggressive behaviors would endanger vulnerable housemates; a male cannot take a vacancy in a female’s bedroom; a female cannot move into an all-male house; a person who needs hands-on assistance with such tasks as bathing and eating cannot live safely in a home without sufficient staffing to meet those needs.
No one expects magic, given the fiscal realities. Nevertheless, New York State must acknowledge its responsibility to families who have cared at home for their children for decades, thereby saving the state millions of dollars. Family support services can help, but cannot sustain families in crisis. New York State must make development of 24-hour residential services a priority and must develop a viable plan for addressing the needs of those in urgent situations.
FAMILIES’ CONCERNS ABOUT THE 1115 MEDICAID WAIVER
- The Legislature should monitor the progress of the 1115 Medicaid waiver to ensure that individual needs are met and that quality of services remains high.
OPWDD has applied to the federal government for permission to transform services into a managed-care system with a per-person capitated rate encompassing medical care as well as ongoing developmental disabilities services. OPWDD’s waiver goals are to improve personal outcomes through individualized flexible services—and to reduce costs.
Families are terrified that under the new waiver essential services might not be available when needed. Families worry that the capitated rates may not be sufficient to meet their child’s needs—and that the managed-care organizations (“DISCOs”) could even fall into bankruptcy due to high unanticipated medical outlays. They believe that DISCOs will need to reduce their costs by rationing services by, for example:
- denying, discontinuing, or reducing needed services
- refusing to serve high-cost individuals with complex medical or behavioral needs or serving them inadequately refusing to increase services when people’s needs increase
- reducing payments to providers, thereby causing deterioration in the quality of services
- limiting individual/family choice of provider
- approving only low-cost new residential development; relegating those needing 24-hour care to vacancies in existing residences
Aware of the failures of managed-care type experiments in other states, families fear for their children. Families want to safeguard the system that works. OPWDD is receptive to families’ concerns and has indicated they will try to address them. However, legislative oversight of the progress of this new waiver is needed to ensure sufficiency and quality of future services.