The Consumer Directed Personal Assistance Association of New York State (also known as CDPAANYS) is a non-profit organization that helps and advocates for healthcare and insurance providers and recipients across New York State. The organization is dedicated to improving the costs and quality of care that can be provided while also ensuring a balance that supports essential healthcare providers and insurance companies.

Primarily, CDPAANYS works with advocacy, systems change, and other supportive-type services to change and improve the Consumer Directed Personal Assistance (CDPA) programs in the state.

Currently, the CDPAANYS is the only non-government organization in New York State that’s working to protect and improve CDPAP. The organization represents the fiscal intermediates, personal assistants, and consumers equally in its efforts toward making health and service care better and more pervasive and accessible to everyone in New York State.

This organization is a leader in healthcare advocacy in New York State and plays a major role in ensuring the security of many vital healthcare programs as well as the comfort and health of the patients who rely on these programs.

What is the agenda of CDPAANYS?

In 2019, the CDPAANYS agenda was the following:


●       Reform managed care to protect equitable reimbursement and ensure consumer choice and quality care – This agenda item is designed to support the equal distribution of funds and wages among healthcare providers and workers while also continuing to offer affordable services to recipients. Managed care is a delicate balancing act when it comes to finances and the CDPAANYS wanted to improve the overall situation so that everyone benefited equally.


●       Community First choice funds must be reinvested in community-based services – At the time when the agenda was developed, funds that were invested into Community First were being used almost entirely for non-community related expenses. CDPAANYS wanted to change that so that all Community First funds were reinvested in supporting vital community services.


●       Expand CDPA to all New Yorkers – CDPA was effectively only available to Medicaid recipients in 2019. CDPAANYS wanted to offer the CDPA program to all New Yorkers.


●       Protect live-in services – Fiscal intermediaries in New York have provided coverage for live-in services for many years, but recent government acts have put this coverage at risk. CDPAANYS wanted to ensure that live-in services were able to continue to be recognized and adequately covered.


●       Provide timely and accurate information about CDPA to the public – The CDPAANYS wanted to establish a dedicated, easily accessible information source about CDPA for all New Yorkers to access whenever necessary. The way that information was being propagated was not sustainable. CDPAANYS also wanted to expand the number of languages that the information was available in.


●       Clarify that non-compete agreements are not allowed in home care or CDPA – Non-compete agreements are not essential when it comes to home care and CDPA, and they have a negative effect on consumer choice as well as on the comfort of home health providers. CDPAANYS aimed to eliminate these agreements for good in 2019.


●       Increase access to critical data important to monitoring the use of the program. The CDPAANYS needed increased data monitoring in regard to CDPA. Then the organization planned to provide key data points to the public and providers so as to increase an understanding of the CDPA program and be able to establish reasonable, effective goals for improving CDPA in the future.


●       Establish a Care Management Bill of Rights – The CDPAANYS realized a need for an established, comprehensive “rulebook” regarding care management in New York State. Care providers and recipients alike would need to be informed of the details outlined in this new Bill of Rights so that they understood the opportunities and limits that existed.


●       Establish a budget authority model for self direction – The CDPAANYS wanted to create budget authority for the CDPA program so that it was possible for the organization to invest when necessary. With a budget authority for CDPA, the program would be able to make purchases and spend when needed to make changes quickly and effectively. It would no longer be required to submit a specific request for each investment or financial expenditure.


●       Extend the Medicaid Buy-In for Working People with Disabilities to retirees over 64. The MBI-WPD program only applied to individuals under the age of 64. The program is designed to help people with disabilities to get a job and be able to make money while still having the medical support they need. However, when these individuals turned age 64, they were no longer eligible for the same benefits that they had before. The CDPAANYS intended to fix this issue in the MBI-WPD program.


●       Enact meaningful campaign finance reform – This list item was designed to remove “housekeeping” money from Medicaid accounts in order to allow the oftentimes buried voices of seniors and the disabled to rise above the rest. CDPAANYS views the current Medicaid situation as an industry more than a health plan and wants to reform the way that Medicaid is funded so that the recipients of the program have a say again.


Thus, some of the key elements on the agenda had to do with expanding the CDPA “audience” to more individuals, clarifying essential information about CDPA, and developing appropriate budgeting and fiscal support measures.

How does CDPAANYS help disabled and disadvantaged individuals in New York State?

CDPAANYS is primarily an advocacy organization that works to make changes to the health support system in New York State, specifically in regard to Consumer Directed Personal Assistance. But, besides being an active advocate for the rights of citizens, healthcare programs, and fiscal intermediaries, CDPAANYS also works closely with CDPA to ensure that the program runs smoothly and is available to as many people as possible within New York State.


The organization’s advocacy efforts help disadvantaged individuals by ensuring that adequate coverage is provided for a minimal cost (if any). CDPAANYS tries to maintain a balance that ensures security for health programs and intermediaries while allowing these programs and organizations to still continue providing the highest quality of care and coverage possible to disadvantaged individuals. The organization also aims to expand the span of various health programs to allow more individuals in various situations to be eligible to join. CDPAANYS is also responsible for creating and providing clear, accessible information to the public.

CDPAANYS Advocacy Efforts

One of the key roles that CDPAANYS plays is to advocate for reforms and improvements to the CDPA program and other health and fiscal insurance providers in New York State. The organization advocates on behalf of both individuals and organizations. Here are some of their recent and influential advocacy efforts:

Keeping CDPAP Alive

In 2019, CDPAANYS advocated on behalf of the CDPAP program after the New York State Department of Health (DOH) made major funding cuts to various caregiver and healthcare organizations and programs. For CDPAP, this meant that nearly 80% of its funding was cut.

The CDPAP program is designed to allow patients to choose their own home health caregivers, which means that patients can also choose their loved ones as their caregivers if they so wish. If their loved ones are unable to act as caregivers, then under the CDPAP program patients can choose caregivers that have specific experience, interests, or knowledge related to the patients’ individual situation. For example, a devout Jewish patient may feel more comfortable with a caregiver who is also Jewish or who has an understanding of the specific care needs a Jewish patient might have in regard to food, privacy, or other matters.


CDPAANYS in partnership with other New York organizations was able to overrule the DOH’s new funding ruling by stating that the stakeholders and related experts had not had a say in the amount and type of cuts that had occurred. Thus, the DOH was sued by these other organizations and was required to restart the process of finding an efficient and affordable way to fund CDPAP and other similar health programs. Because of CDPAANYS’s advocacy, the CDPAP program is still alive and well.

Lobby Day

In February of 2020, CDPAANYS was responsible for organizing a Lobby Day in Albany, New York. On this day, laypeople are invited to meet with legislators to discuss issues and incite change and movement. On this particular Lobby Day, the CDPAANYS asked participants to advocate on behalf of the CDPAP program to stop fiscal cuts from being made. These fiscal cuts could put the CDPAP program at risk, so participation was essential to the organization’s efforts.

Rally Against In-Home Care Program Funding Cuts

In March 2019 the CDPAANYS organized a rally outside Governor Cuomo’s office that argued against the proposed cuts to a specific in-home care program. In-home care is an essential part of day to day life for so many New Yorkers, and the proposed funding cuts could prove disastrous to the health and well-being of these individuals should the proposition be approved. Not only would the patients experience difficulties, but the cuts could have also resulted in almost 100,000 individuals being unemployed. The CDPAANYS led this rally against these proposed cuts with numerous lay people supporting the effort as well.