Jawonio Hosts Annual Advocacy Forum

For parents of children with disabilities, providing care does not end when they reach adulthood.

To address their concerns, Jawonio hosted their second annual Legislative Town Hall meeting on Thursday in which individuals in the community shared their concerns and suggestions with a panel of elected officials: Senator David Carlucci, Assemblywoman Ellen Jaffee and Assemblyman Ken Zebrowski.

“People need to have support if they’re going to have to keep their disabled individual in their home for a longer period of time,” said Jill Warner, CEO of Jawonio. “

94 people attended the family advocacy day with the legislators took place at Jawonio Tech in New City and looked at the New York State’s budget impact to developmental disabilities services, mental health services and other programs.

A big impact that was discussed is the People First 1115 waiver. The State Office for People With Developmental Disabilities (OPWDD), the State Department of Health (DOH) and other stakeholders began the process of seeking significant programmatic and fiscal improvements to the service system through the development of a this new waiver, according to its website.  

“This is a Medicaid waiver is the funding agreement between the state of New York and the federal government. It will become the new financial platform for all the service systems in NYS. It’s based on managed care,” said Camp Venture Executive Director Dan Lukens. “Systems and bureaucracies don’t care about people. People care for people. The more that that care is guided by the people who really value service recipients the most, which is their families, the better it’s going to be.”

Legislators John Murphy and Ed Day also attended the forum.

“Certainly we’ve gone through several years now dealing with the state budget. I know this year is not as bad as previous years,” said Zebrowski. “However, what I hope for is that when we come out of this, we can make start to make some new investments, such as staff salaries, additional housing and beds.”

“As a former teacher of special education, I understand how important it is to have a strong early intervention program, as young as we can possibly get them,” said Jaffee. “In terms of People First 1115, we need to ensure that the quality of the services doesn't diminish and the outcomes improve. I'm also concerned with the speed this is being implemented because it doesn't give the community the opportunity to review it carefully.”

“When we talk about cost of living adjustments, it's so important that people can have that tenure in our facilities,”said Carlucci. “We're trying to find efficiency and find ways to make your lives easier with dealing with the red tape of bureaucracy.”

Here are a few of the comments and concerns made during the forum:

“My daughter Amanda Keegan graduated high school last June and now she’s in the adult system. My first panic attack was, what will happen when Amanda comes home from (the adult system) and I’m not home. Something that is very lacking for the parents and our children is an after-program program. Many of us can’t work because we don’t these after-program programs.”

He added that the People First meeting times changed so that instead of alternating meetings between daytime and afternoons, all meetings are now during the day, which becomes conflicting with work schedules.

Thomas Keegan

 

“The staff salaries are obviously very important and they haven’t gotten a raise in three years. They need help and they need money and they need our support. I am an active parent.”

Bobbie Heine

 

“What we’re seeing is a mismatch between funding and need. We’re seeing less funding and more need. More and more young children are coming in with disabilities and special needs. The waiting list (for housing) is getting longer and longer and we’ve been on it for many years now. Also, in this county, a lot of young adults are falling in the cracks. They’re not meeting the criteria for OPWDD but might meet the criteria for mental health.”

She added that all pre-schools in the county that can provide care for children with disabilities are at full capacity.

Gail Nachimson, who works at Jawonio and mother of a young adult with a disability

 

“The house is not a house, it’s supposed to be a home. For it to be a home, the staff needs to remain for long periods of time. In terms of early intervention, there’s nothing better than getting (care) started as soon as a child is identified.

Sharon Rosen

 

“The true heroes of their lives are their parents. We as professionals can go home at 6 o’clock, but parents face the challenges of working with these children every single day. They get wonderful services from different agencies in the county. I plead with the legislators, don’t let these heroes down.”

William Greenberg, medical director at Jawonio

 

“I want to say thank you so much to all the service providers who take such good care of the children and adults in the community. I want the senator to be the best advocate for you in Washington.”

Susan Spear, on behalf of Senator Kristen Gillibrand

 

“I have had the hardest 14 years of my life trying to raise my daughter by myself and trying to maintain employment. I’ve been on the waiting list for housing for my daughter for five years now. It wasn’t because I needed it then, but I knew that at some point, I would have to and that the list was long. I love my daughter to death and would never want her out of my home, but what I’m facing right now is the inability to keep a job and make money to support myself. I also have a son who is six years old and needs a normal life. It seems like everything I need to get for my daughter is a fight.”

Kristina Woodhouse of Nyack. A single parent of a child with a disability.

 

“Our son is 28 years old and has been diagnosed as highly functioning Aspergers. He graduated college and is staying home everyday. The state has determined my son is eligible for certain programs. However, there is not a program in place for Aspergers.”

Fred Newmark