Despite their advice, Angie believed that Cassy should live at home
with her family, no matter what her needs. Through persistent
efforts to find support, Angie contacted Margaret Mikol, founder of
Special Kids Need Involved People (SKIP) in New York and a parent
of a child with similar needs. Margaret knew the Commissioner of
the Office of Mental Retardation and Developmental Disabilities
(OMRDD) was interested in learning about families' needs first hand
and arranged a meeting between her, her Special Assistant, and
Angie.
In realizing the immediacy of the situation and knowing she wanted
to move from New York City, the Commissioner assisted Angie to seek
services in a community that had a commitment and experience in
developing individualized services. Based on its reputation, the
Syracuse Developmental Services Office (DSO) was approached and
agreed to arrange services for the Perez family. Though the agency
did not have direct experience in developing services for someone
with Cassy's needs, it did have experience in pulling resources and
manipulating funding streams to meet individual's needs in
exceptional cases.
The Syracuse DSO Deputy Director manipulated OMRDD funding and
gained support from several local agencies to assist the Perez
family to move and establish a new home with Cassy. For example,
a church group provided a down payment on their home. Renovations
were made possible through family support funds. ARISE, the local
Independent Living Center, converted Housing and Urban Development
funding to build a wheelchair ramp. Cassy receives 20 hours of
nursing care through Medicaid.
Angie has been amazed at what was able to be accomplished. For the
past four years, the Perez's have enjoyed Cassy and their new home
in Syracuse. Her room is the family gathering place, whether it is
to watch television or catch up on the day's news.
Angie has also, however, been concerned with the fragility of her
situation and is working to get services that lend stability to her
family's life. For example, she would like to own her own home.
She would also like to have more dependable nursing care so she can
get a job outside of her home.
The Syracuse DSO has continued to listen to Angie and has worked
over the past few years to be more responsive to her family's
needs. This is an example of how a group of committed individuals
can be creative and pool resources, regardless of the obstacles
presented by the service system.
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