Can Albany support complex needs of those with disabilities?

In a recent story 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 plans, and move the payment of home care services for the seniors and people with disabilities to fee for service.

The week prior, advocates of the legislation touted a $3 billion savings if the bill were enacted. Neither group mentioned the consumers of these services. 

In all of the talk of the bloated profits of managed long-term care plans and the savings from moving home care services to fee for service, no one has explained how this legislation will be better for consumers of home care 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 on the bottom.

As consumers of home care services, we have no fancy lawyers or lobbyists. All we have is decades of experience living in the community with physical disabilities.

Let us clarify: We rely on home care workers, and believe they should be compensated fairly for their critical roles. We have experience with both managed long-term care and fee for service — both systems have challenges.

The legislation vilifies managed long-term care for cutting services and reaping enormous profits. Still, the state health department can require managed care plans to provide appropriate services and limit their profits.

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 health care system. As one of our colleagues often says, “Being disabled can be a full-time job.”

We have seen consistent efforts by the state health department to cut services to people with disabilities. They closed independence care system, the only managed care plan designed to meet our needs, thinking they could save money by forcing us to a larger managed care plan.

The savings were not realized. The alternative to home care services is costlier nursing home institutionalization — or death.

We live by the motto that our lives are not complex, the system is. The legislation proposes to eliminate managed care plans and make home care a fee-for-service. It does not address how people like us will get other services currently authorized by our managed care plan, like access to our wheelchairs (complex rehab technology) and medical supplies like catheters needed to remain independent.

Getting these services in fee for service was extremely difficult. With managed long-term 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 manage care benefit package — like social adult day care, designed to address depression and loneliness so prevalent in our community — are not funded anywhere else. The surgeon general recently recognized loneliness as a health crisis. 

Our population is more likely to live alone, have difficulty accessing transportation and finding accessible facilities, leading to higher than average levels of loneliness. What will happen to adult day care if the legislation passes? No one knows.

The answer to “what comes after managed long-term care?” 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 managed care coordination with Health Homes. While these organizations are good at providing care coordination services, the most recent state budget proposed a $125 million cut to the program, the third year of significant cuts.

We worry that these programs will not be adequately funded to do a good job.

The landmark Olmstead decision by the U.S. Supreme Court solidified our right to live in the community. Still, progress will only come from ensuring that those impacted 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.

The authors are co-leaders of the Civics League for Disability Rights