Consumer Directed Personal Care Assistance - Lobbying Against Government Cutbacks

Ira E. Holland, President of Concepts of Independence, Inc.

Last January the tidal wave of Republican reform finally hit New York State (as it did many other states). With it came a new governor and a new set of home care priorities focused on streamlining a program that served more than 75 thousand people at a cost of nearly $2 billion per year. The governor's goal was to slash $400 million in home care services, which would have forced me and other ventilator-dependent quadriplegics into nursing homes.

In response to this indiscriminate cost cutting proposal, we at Concepts of Independence, Inc. mobilized a campaign directed at the Legislative and Executive branches. We made the case that these proposed cuts would cost the state at least an extra $10 million per year and would prevent the state from saving an extra $65 million annually.

For the next five months, on a 7-day-a-week basis, we worked on this issue while still maintaining our current program which serves more than 400 clients and moving our office to less expensive quarters. By the end of April it became apparent we would have to make a big final push and spend four days in Albany at the Capitol.

During those days in Albany we spent long hours in meetings:

• With Dr. David Hornick and Dr. Roberta Miller, proponents of Consumer Directed Home Care programs in upstate New York, to establish strategies for the implementation of our program in their area 
• With advocacy groups 
• With representatives from the Senate and Assembly Health Care and Social Service committees and members of the Budget and Appropriations Committees
• With the Capital District Independent Living Center and members of the Albany and Schenectady Departments of Social Service
• With the administrative aides of key Senate and Assembly members
• With potential clients and some dissenters

All of these meetings culminated in an afternoon conference attended by members of the legislative body and representatives of many upstate districts of Social Service. Assisting me in our presentations were several members of our Concepts of Independence, Inc. staff, with special effort and support provided by Mr. Anthony Caputo CPA, our financial consultant, and by Michael Katz, Esq. Throughout all of these meetings, our goal was to educate and familiarize everyone with our program and to convince them that Consumer Directed Home Care programs are the cost effective answer to the economic crisis in home care for the appropriate candidates. We left Albany convinced that we had given it our best shot.

The seemingly unending budget process still continued for an additional month. Finally on June 2,1995, the New York state budget and the homecare bill was signed! This piece of legislation will affect hundreds of severely disabled people, many of whom use ventilators, and will enable them to remain out of nursing homes and in control of their own care. The legislators included language which mandated the continuation and expansion of the Concepts of Independence Inc. Consumer Directed Home Care Program throughout the state of New York.

Without doubt, it has been a long and exhausting battle, but it appears that we have accomplished what we set out to do. The economics of the Concepts of Independence, Inc. Program would appear to speak of a program whose time has come. The ventilator- assisted clients may realistically be able to secure their future in the most cost-effective manner available to the states. This certainly is an idea that must be pursued! I sincerely hope that New York's initiative will lay the ground work for national home care programs.

Editor's Note: If you would like assistance in pursuing such a program in your state or details on the cost comparison and savings or on who to contact and how to lobby, give Mr. Holland a call at work (212) 293-9999 or (612) 826-6270.

(July 1995)