Testimony

October 27, 2009

Testimony of Kathy Hyatt Callahan, Parent, Board Member of the Long Island Family Support Consumer Council and YAI Medicaid Service Coordinator, before the New York State Senate Finance Committee

Dear Senator Kruger,
I am a parent of a developmentally disabled adult. My 29-year-old daughter Christin receives services from three not-for-profit agencies under the auspices of the State Office of Mental Retardation and Developmental Disabilities. I have worked in the field as a Service Coordinator for 20 years on Long Island. 

My daughter and our family rely on the services of these organizations to provide the care she needs. She needs to be bathed, fed and provided with various therapeutic services daily for her health and well being. One of these agencies provides around-the-clock care for her and presently she lives in a group home, also known as an Individual Residential Alternative, in the community.

I understand the fiscal realities that exist in New York State at this time. It is just that the proposed budget cuts for the fiscal year 2010 threaten to undermine all of the disability agencies' ability to provide services; smaller agencies, such as the one that provides for my daughter’s home, will need to cut essential services or close their doors. These types of cuts will put my daughter’s safety in jeopardy. Without well-trained, adequate staffing, these residences will be unable to function. The residence provides 24-hour a day oversight. Her day program provides additional supports and purposeful day activities for her. Again, staff ratios and consistent well-trained direct service providers are essential at her day program as well as her residence for her health and safety.  

In the last year since this financial crisis has come to light in our country, OMRDD and not-for-profit agencies providing care for people with developmental disabilities have already incurred changes in their revenue and have acted responsibly. I have listed some facts below.  
 
1. As a parent and as a professional, I am aware of the money-saving initiatives that have been instituted by the more than 30 agencies on Long Island that I am familiar with; I am sure others have done the same. In addition, they have all stepped up their fundraising efforts. 
2. Last year, the not-for-profit direct service professionals who provide the hands on services that my daughter and the many people with developmental disabilities rely on for their care and safety were not provided with a cost of living increase or “trend” for the incredibly difficult work that they do. State employees were given a trend.
3. NY State Cares, the program that provides the funding for the development of residential services through the agencies and OMRDD were reduced. Due to this reduction, future development of this program can no longer provide for the number of people waiting for placements. NY State Cares is only providing 83 beds or opportunities over the next three years. This is woefully inadequate. As there are currently over 2,000 people waiting for beds/opportunities on Long Island alone. The number of people on the L.I. waiting list has increased by at least 300 to 500 people each year for the last ten years. We can are no longer hope to keep up.
4. Day program funding serves the graduates of special education programs each year who are living at home and in residences. New budget cuts will cause adults who have graduated at 21 to have fewer or no options for further education and training. Not only would this severely limit their ability to be productive citizens in the community, it also eliminates needed supervision for them during the day. With fewer placements more families will be faced with the dilemma of having to provide at-home supervision during the day. This could result in families having to make a choice of keeping a job or staying home to take care of a family member. Working families on Long Island cannot afford to hire someone to provide for their adult children while they work. Nor would caregiving services provide for the real needs of their adult children. 
 
As you may know, services for people with disabilities have come along way in the last 35 years. Institutional care was unacceptable back then and it is unacceptable now. It was neither cost effective nor humane. As a parent, I am very grateful for the quality of my daughter's care and services. As a professional in the field for the last 20 years, I have witnessed first hand the benefit to our society that the current service delivery system provides. The individuals I serve are living productive lives in the community. They provide their communities with volunteerism and many are working taxpayers because of the success of these services. As a society we cannot afford to turn back the clock.

The decision to seek residential placement for my daughter was a difficult but a necessary choice. As I get older, I will physically be unable to provide the care that my daughter needs. As an adult she needs a productive day program and long-term care in a safe, homelike environment that meets her needs beyond my ability and life expectancy to provide.

The progress that has occurred in this field came about because of the actions of brave, taxpaying parents who instituted law suits to protest the institutional care of Willowbrook and other facilities. Those families founded many of these not-for-profit agencies and supported the changes that brought OMRDD into existence. Those of us who are now parents have not forgotten these facts. We can not go back and we will not go back. Thank you for your time and consideration of these facts and concerns shared by the individuals served, their families and the professionals that provide these essential services.