In a February 9 article in New York Crain’s Health Pulse, the New York State Health Plan Association released its analysis of the Home Care Savings and Reinvestment Act, a bill proposing to eliminate Managed Long-Term Care (MLTC) plans and move the payment of homecare services for seniors and people with disabilities to fee for service. In the previous week, advocates of the legislation touted a $3 billion savings if the bill were enacted—but neither group mentioned the consumers of these services.
In all of the talk about the bloated profits of MLTC and the savings from moving homecare services to fee for service, no one has explained how this legislation will be better for consumers of homecare services. Presumably, the savings will be reinvested in home care and we will benefit from those reinvested dollars. This plan sounds like trickle-down economics to us, and we all know how well that works for the people at the bottom of the economy.
As consumers of homecare services, we have no fancy lawyers or lobbyists; all we have is decades of experience in living in the community with physical disabilities. Let us clarify: We rely on homecare workers and believe they should be compensated fairly for their critical roles. We have experience with both MLTC and fee for service, and both systems have challenges. The legislation vilifies MLTCs for cutting services and reaping enormous profits. The New York State Department of Health can require MLTCs to provide appropriate services and limit their profits—but they don’t.
The union is focused on workers, the plans contest the savings, and the providers are focused on their rates. We are concerned about how we will get the needed services and how many hoops we must jump through to secure them. Our community already faces huge health disparities and early deaths due to the unnecessarily complex healthcare system. As one of our colleagues often says, “Being disabled can be a full-time job.”
We have seen consistent efforts by the New York State Department of Health to cut services to people with disabilities. They closed the Independence Care System (ICS), the only MLTC plan designed to meet our needs, thinking that could save money by forcing us to a larger MLTC plan. The savings were not realized. The alternative to homecare services is costlier nursing home institutionalization or death.
We live by the motto that our lives are not complex; the system is. This legislation proposes to eliminate MLTC and make home care a fee for service. It does not address how people like us will get other services currently authorized by our MLTC, such as access to our wheelchairs (complex rehab technology) and medical supplies we need to remain independent, like catheters. Getting these services via fee for service was extremely difficult. Even with MLTC care coordination, getting a new wheelchair takes many months. We can only imagine how much longer it will take without the advocacy of a care manager.
Other services in the MLTC benefit package, like social adult day care, designed to address the depression and loneliness so prevalent in our community, are not funded anywhere else. The U.S. surgeon general recently recognized loneliness as a health crisis. Our population is more likely to live alone and have difficulty accessing transportation and finding accessible facilities, leading to higher than average levels of loneliness. What will happen if the legislation passes? No one knows. The answer to “What comes after MLTC?” is, at best, vague, and there is no guarantee that consumers and consumer advocates will have a seat at the table when a new system is designed.
One proposed solution is to replace the MLTC care coordination with health homes. While these organizations are good at providing care coordination services, the most recent New York State budget proposed a $125 million cut to the program—the third year of significant cuts. We worry that these programs will not be funded adequately enough to do a good job.
The landmark Olmstead decision by the Supreme Court solidified our right to live in the community. Still, progress will only come from ensuring that those affected have a seat at the decision-making table. This isn’t merely about token representation or checking boxes; it’s about fundamentally shifting power dynamics to center on the voices with the most to lose. By embracing consumer expertise and ensuring their active involvement in decision-making processes, we can create a more responsive and inclusive system that promotes genuine empowerment and autonomy for individuals with disabilities. After all, it’s our lives and our futures that are at stake.
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Sharifa Abu-Hamda and Marcus Johnson are co-leaders of the Civics League for Disability Rights, an independent, volunteer-led group of New Yorkers with disabilities who advocate for themselves, their community, and change in the healthcare system for people with physical disabilities.