When my family first moved to the Syracuse area from California more than 12 years ago, I heard about a parent group that was looking to create meaningful life options for adults with special needs once they left the school setting. My daughter, Amanda, who has Down syndrome and various health challenges, was only in second grade, but I was already nervously looking to that future.
There seemed to be a huge disconnect: We fought for inclusion in our schools. We wanted our children to experience learning and socializing with their peers and their community. It seemed that once they left high school all individualization and opportunities disappeared.
Just 12 years ago, adults with developmental disabilities had few options. They could: stay at home with their families, with little to no supported activities; attend a day habilitation program; or live in an institutional setting.
We tell our typical children to follow their passion: figure out what they want to do in life and then “go for it.” We say, “Experiment with choices to learn what works for you.” Our adults with special needs were presented with the opposite.
If there was a parent group trying to improve this situation, I wanted to meet them! That is how I was introduced to Familycapped Inc., which eventually became Advocates Inc.
Founded more than 25 years ago, Advocates began as a group of parents. They came together to answer the question of how to morally and socially support one another to raise our children with complex medical, intellectual and developmental disabilities. These families were looking for peer support, recreation, training and shared experiences.
Led by executive director Nicholas Cappoletti and funded by the New York State Office for People with Developmental Disabilities (OPWDD), Advocates began supporting families in various stages of their journey by providing care coordination, training, support services and recreational opportunities.
In 2005 the nonprofit approached New York state regarding a new program called “self-direction” and was selected as one of the first agencies to pilot this model.
Self-direction gives individuals one-on-one support and allows them choice in programming. This is the opposite of a congregate model, in which services are set and the adult is expected to follow the program with limited or no choice as to how she spends her time.
Amy Dugliss, vice president of services, is the “person-centered conscience” of Advocates. “We presume competence,” she said recently. “Sometimes we are the only people outside the family that see the possibilities. At times we even have to push families to step out of their comfort zone for their child. We help them imagine their child in new settings and attempting new activities.”
Advocating for the person to be whatever they want to be and encouraging them to try is the agency’s goal. The agency advocates for people with developmental disabilities to fully participate in their home, schools and communities in a meaningful way.
Related: Mentors are key to a satisfying life for a person with a developmental disability
Through self-direction, these adults with disabilities are staying at home but receiving support to reach out into their community. Advocates has clients that have received college degrees, are learning to drive, are living in their own apartments, are married, are working in their community and much more. Mentors are key in making this the program successful.
Advocates puts considerable thought and effort into matching mentors with their employer. They look for compatibility socially, and a matching needed skill set. A co-employment model is used so both the families and the agency have responsibility to train the mentor. Each mentor is trained to assist their person toward doing things on their own.
Mentors are hired by referral from families served, and by word of mouth by other mentors. Advocates attends college fairs and targets human services and nursing students. The agency reaches out to Onondaga Community College, Le Moyne College and Syracuse University.
Advocates also provides a mentor backup service. One of the biggest challenges of self-direction can be when a mentor is not available to work a particular shift.
Advocates understands families need to enter into self-directed services at their own pace. To allow this, a family liaison helps with the steps needed to begin the process. The agency also has a reimbursement process for family support services, to provide resources until funding begins.
For families with younger children, a new state-funded partnership with the YMCA is being piloted. Mentors work side by side with YMCA employees to create an inclusive “before and after school” childcare program, allowing children with special needs to be with their classmates in their community. The YMCA has age-appropriate programming geared toward all children, and with individualized support everyone benefits.
In preparation for significant changes to the delivery of disability services, including New York’s implementation of Medicaid Managed Care, Advocates became an affiliate of Upstate Caring Partners Inc. of Utica on Jan. 1, 2018. This strategic merger allows both agencies to provide services to meet the growing needs of people with intellectual and developmental disabilities, with supports addressing mental health, specialized medical care, behavior strategies and more.
Advocates now serves 1,000 individuals in Central New York and has more than 1,000 employees. The agency’s board of directors continues to reflect the mission of being parent- and family-led. Among the agency’s most popular programs are its kickball leagues, coffeehouse dances, family nights at the Syracuse Crunch and Chiefs games, and holiday and summer parties.
At the end of March, Advocates’ Liverpool offices will move from the 636 Old Liverpool Road location to larger quarters in the Thruway Office Building at 290 Elwood Davis Road — still in Liverpool. The agency is relocating in order to make room for additional clients, services and new employees. (The Old Liverpool Road offices will be closed on March 21 and March 22, and the agency will reopen at the new location on March 25.)
Advocates continues to find ways to empower our individuals with developmental disabilities to direct their lives and engage in their community. Adults with developmental disabilities can have a future with choice, opportunity and a sense of meaning: what every parent wants for their child.