I got the call. The one that everyone fears when the phone rings in the middle of the night. My lifelong friend had a life altering stroke and she would need care for the rest of her life — with no insurance and no money to pay. This story is too familiar for so many; and for our sick family members or seniors, the question of long-term care is one that invokes real fear.
The ethos of my career has centered around advocating for my community and marginalized people. Many families that attend The Historic Emanuel AME Church, where I serve in Harlem, work hard to make ends meet while also trying to save enough to create generational wealth. I’ve seen firsthand the sacrifices that my congregants make for their families. If families want to save money for their kids and grandkids, they first need to be able to access affordable care for their aging and ailing family members.
The Consumer Directed Personal Assistance Program (CDPAP) has provided the ability for many in my community to care for their families without sacrificing their life savings. Currently, there is a proposal to alter CDPAP, which could have a terrible impact on the minority, low-income and senior communities that I fight for.
CDPAP allows New Yorkers suffering from disabilities or illnesses to receive care from trusted individuals, often family members or friends, paid for by Medicaid. The program makes it possible for anyone who needs care to access it, regardless of their financial situation. In my community, this program is often the only option for care. Nursing homes and full-time care aides are expenses that the average person cannot afford. My fear is that the proposed changes to CDPAP could force many into debt or sacrifice care.
Presently, our Albany leadership is moving at a fast pace to overhaul the program. Access to affordable care is already limited, and a hastily executed process could have devastating consequences for our most vulnerable.
The proposed changes to CDPAP fail to account for the needs of communities like ours. Many already face significant barriers to accessing quality care due to geographic constraints, economic limitations and historical socio-racial factors that have systematically discriminated against minority communities within the health care system for generations.
By overhauling CDPAP, our state leadership will only exacerbate these disparities by potentially reducing the number of providers available or shifting the program’s administration to entities that fall short of the cultural competency needed to serve our community.
When access to care is disrupted — like it has been in other states that moved to a similar system — the consequences are dire. This could lead to a reduction in the quality and availability of care for those who need it most. It could force program participants into the difficult decision of either going into debt to afford care or losing access to care altogether. This is a choice no one should have to make, especially those in communities where health outcomes are already poor, and access to care is fragile.
The 400 Foundation, which I co-founded, is dedicated to creating generational wealth for African-Americans, recognizing that economic stability is inextricably linked to health outcomes.
If the state continues on this current trajectory, it could undermine not only the health but also the economic stability of the most vulnerable. The loss of jobs for caregivers, many of whom are from marginalized communities themselves, would be a blow to our efforts to achieve economic justice and stability for all New Yorkers.
In addition to this, the state’s proposal seems to ignore minority- and women-owned business enterprise (MWBE) participation mandates, which increase access to opportunities for minority companies.
The CDPAP program is relied on by too many people for Albany to get this wrong. It is incredibly important in my community, and in many other minority communities, and often serves as the only option for affordable care for our sick and aging.
As a pastor and community leader, I urge our state leadership to reconsider its approach. The health and economic stability of our communities depend on it. We must prioritize the needs of the people and ensure that any changes to CDPAP are made with care, deliberation, and a genuine commitment to equity. Only then can we hope to achieve the goal of providing truly accessible, affordable, and equitable care for all New Yorkers.
Mootoo serves as pastor at The Historic Emanuel AME Church in Harlem and is vice president & co-founder of The 400 Foundation.
