Empowering through Organizing and Advocacy for Self-Direction

Building an Organizing and Advocacy Model to Improve ^ Self-Direction

Why are we discussing this?

Setting the scene in New York For years, CDPAP was the darling of the state s Medicaid program. In 2014, significant growth began. In 2017, CDPAP began facing cuts. In 2020, then-Governor Cuomo almost turned down billions in Federal aid because he would be unable to cut CDPAP

Setting the Scene in New York (2) Over the next two years, we ran an unprecedented campaign Fair Pay for Home Care , achieving a home care minimum wage that will level out at $3/hour over the minimum wage This year, Governor Hochul is proposing cuts that, by her estimates, total $1.2 billion when fully implemented and would kick over 100,000 people out of the program. Budget in development.

Defining Organizing Community organizing is a set of methods, practices and strategies that address public problems and also strengthen people s capacity to work together and exercise power. -Levine, Peter. 2022. Community Organizing. Civic Theory and Practice website. https://sites.tufts.edu/civicstudies

Defining Advocacy While all lobbying is advocacy, not all advocacy is lobbying. Advocacy is an action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others. It includes public education, regulatory work, litigation, and work before administrative bodies, lobbying, voter registration, voter education, and more. - Bolder Advocacy. 3/24/2016. 4 Ideas to Help Your Foundation Discuss Advocacy. Alliance for Justice. https://afj.org/article/4-ideas-to-help-your-foundation-discuss-advocacy/

Choices in Organizing Impact Advocacy Who is the community you are bringing together? How are you going to bring the community together? How are you setting your agenda? What do you want - and how do you decide? Who will belong? Who are you targeting?

Poll question 1

Organizing and Advocating to Win There are no permanent enemies, and no permanent friends, only permanent interests. Former British Prime Minister Henry John Temple

Defining our community Consumer Directed Action of New York Fiscal Intermediaries Consumers Hand in Hand Consumers Personal Assistants Personal care aides Agencies New York Association on Independent Living Centers for Independent Living Disabled individuals, many using CDPAP or home care services

Defining our Community (2) Other home care associations More conservative associations Smaller, targeted associations in NYC Legal Services community 1199 SEIU Conservative and Progressive Jewish groups Republican and Democrat lawmakers

Setting the Agenda We made sure our agenda worked for everyone involved: Consumers wanted higher wages for workers so they could compete with fast food when hiring; Workers wanted higher wages to earn a living in NY; Agencies wanted to make sure they received reimbursement.

Setting the Agenda You -and your agenda -do not have credibility if they are not mutually arrived at through parties meaningfully listening to each other. When parties build a common agenda, it establishes a common understanding of the bigger problem. This helps hold you together when the going get tough (foreshadowing)

Fair Pay for Home Care Agenda Workers would receive 150% of the minimum wage Agencies would receive benchmarked rates based on actual costs. Won $3 in wage increases. $2 in year 1 and another $1 in year 2, with about $750 million for agencies to pay for the increase.

Fair Pay for Home Care Advocacy Sophisticated media strategy boxed out the Executive and others who were opposed. Aggressive AND CREATIVE grassroots campaign. Pursuing bi-partisan support, even in a one-party state. Having different organizations play to their strengths. Legislative Organizing Action Media Political Relationships

Remember our foreshadowing Despite winning $750 million to pay for the wage increase, managed care plans failed to pass through increase to providers. Consumers and workers were fighting with agencies to demand the funds get passed through. Listening had built understanding, and providers standing on the line with consumers and workers saw the favor returned.

Going back for more Because consumers and workers stood with providers, the next year, despite not receiving all of the money the year before, providers once again joined the effort to win all of Fair Pay for Home Care.

2024 Now the coalition is built on defending against unprecedented cuts and attacks: $2.54/hr wage and benefit cuts in New York City and $1.66/hr wage and benefit cuts in the suburban counties -12% of compensation. For CDPA only. Elimination of designated representative who self-directs for those who cannot do so themselves -kicking 100,000+ people off the program Eliminating aspects of consumers right to self-direct with daily & weekly hour limits and mandatory training. Proposed elimination of agencies.

2024 (2) Unlike cuts faced by CDPA in the past, now there is a broad coalition assembled and ready to fight hard against these cuts, with established trust. And no -Kathy Hochul does not have the Infiniti Gauntlet.

Questions? Bryan O Malley, he/him Bryan O Malley, he/him Executive Director Consumer Directed Personal Assistance Association of New York State Consumer Directed Action of New York Bryan@cdpaanys.org 518-813-9537