News & Events

WIHD Staff Testify At Public Hearing

BARBARA LEVITZ

A Response to OMRDD's Five Year Comprehensive Plan

March 7, 2005
Kingston, New York

My name is Barbara Levitz and I am the parent of a young adult with developmental disabilities. I serve on the MRDD Advisory Council and DDPC. I direct The Family Connection program at the Westchester Institute for Human Development, a University Center of Excellence in Disabilities. The Family Connection is a parent-staffed program that helps families make informed choices in accessing and coordinating services and resources. We also train child health and other professionals. As the Hudson Valley Office of Parent-to-Parent of New York State, the program offers information, support and encouragement by matching parents experiencing challenges with other families.

Services for children and our families are part of the OMRDD Plan, including family support, a model that demonstrates flexibility and innovation in the service system. The plan mentions improving the HCBS Program. OMRDD, working together with its constituents, should identify aspects of this program that could be re-tooled to better meet the needs of children and our families. Services and supports that are designed for children must account for the lifestyle differences between children living at home with families and adults in community living arrangements. In a system that has become increasingly more responsive to individualized needs, it is important to be vigilant in getting the “buy-in” from other service systems to help implement improvements and new opportunities for children. Of particular importance, as noted in the Plan, are the many educational transitions for students of all ages. Additionally, although the plan acknowledges the federal grant from CMS to develop a statewide Family-to-Family Health Information and Education Center, this funding provides only the foundation to build such a vital asset. Thus, the OMRDD Plan should incorporate long-term goals for this new health network.

I was fortunate many years ago to have assisted in establishing parent-to-parent in New York State as an initiative of the statewide Family Support Service Committee. Parent-to-Parent of NYS is identified as a partner with OMRDD in planning and policy. That is significant, but what is equally important is that increasing support for staffing of this program would enable more families to be served. The following remarks are from my colleague, Laura Carfi, Regional Coordinator for the Hudson Valley Office of PTPNYS.

" I would like to first take this opportunity to thank the Taconic DDSO, Wassaic Campus for providing office space for our Mid-Hudson satellite office. They help me learn about resources, systems and networks. And, I share what I learn with other families. I have also had opportunities to provide a parent’s perspective at community forums on issues that concern families.

My first personal experience with a “parent to parent” connection was ten years ago with another mom whose son also has Down syndrome and is the same age as mine. Over the years, we have shared laughter, tears, anger, excitement, worry, and much happiness. We have been a great strength to each other and share the same visions for our sons to live independently in a “home of their own”, have employment opportunities, be productive members of their community, have good self esteem, be safe and be self advocates. This connection has enabled me to view the future with a positive attitude. Parent-to-Parent is an invaluable program that often results in lifelong friendships and support networks. Parent Coordinators match families with trained volunteer parents who have children with similar disabilities or special health care needs. They share information about school and community activities, personal experiences, and practical tips. Parent Coordinators provide information and referral including access to services, parent training, educational advocacy, and support groups.

Parents of children of all ages say that it makes life better knowing that someone else has “been there”, “seen that” and that “there is light at the end of this tunnel”. This gives families hope, inspiration, courage, knowledge, and power to be able to continue their journey of raising a child with a disability in a positive way”.

Parent-to-Parent Coordinators, like Laura, demonstrate that more parents should be employed as professionals in the field of disabilities. “Parents as service coordinators” is another professional role that builds meaningful careers for families and capitalizes on real life experiences. OMRDD should explicitly integrate such an initiative into the Plan to help meet the challenge of having a stable, dedicated, experienced and well-trained workforce of service coordinators.

Thank you for the opportunity to speak today on behalf of Laura and myself in support of this plan that sets a great future direction for individuals with developmental disabilities in New York State and our families.

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