JF&CS News Spring 2018
Education is one of the most important aspects of a child’s life. What a child learns in school, through the curriculum as well as through socialization with peers, provides them with the building blocks to start working towards the future they envision. Children with disabilities are entitled to the same enriching educational experience as their peers, but they and their families are often met with roadblocks along the way.
For parents who are trying to juggle work, family, and a multitude of other responsibilities, understanding education law and advocating for services for their child often falls to “tomorrow’s to-do list.” Adding to the never-ending to-do list is the question of supporting a child when they age out of the State’s education system. When a child with disabilities turns 22, their support system is upended.
For Ed Bell, a parent of a child with disabilities and a key funder in JF&CS Disability Lifespan Solutions, approaching his son’s 22nd birthday was an overwhelming prospect. “Every parent who has a special needs child dreads this turning point at 22. You’re basically on your own – every single parent with whom I have met in the last 22 years has said the same thing: as their child approaches 22, they are looking into the abyss. Very few of them, us included, were ever really prepared. No matter how knowledgeable you are, there is both too much information and too little information; it’s hard to sort through it. Moreover, you’re facing this situation: what happens if my kid has to stay home all day? What am I going to do? Who is going to pay for it? How are we going to manage?”
The JF&CS team of family navigators helps families like Ed’s get the most out of the educational experience. Some families approach Disability Lifespan Solutions for guidance with every step of the process; others benefit from brief consultations around specific issues. Ed found JF&CS helpful “from start to finish. JF&CS helped us with research, with understanding the options; they even filed all the paperwork.” He added, “The people in the program stay in touch and keep following up to make sure there are no bumps along the way.”
Another family shared their story, echoing similar concerns around how daunting the system can be. “As anyone with a child of special needs can attest, the overall process of not only understanding, but maneuvering the Special Education system, can be daunting, frustrating, and simply stated, overwhelming. I can say, unequivocally, that without [Family Navigator] Joan Munnelly's assistance, I'm sure I would not have survived the process and more importantly, my son would not have received the services he needed, deserved, and was entitled to. Joan and the Family Navigation team stood out as one of the best in the field. Without their direct input, guidance, and knowledge, I'm confident that my son would have fallen through the cracks. Joan’s skill, enthusiasm, professionalism, and business acuity have enlightened me to the critical value of partnering with such an advocate.”
The support system provided by JF&CS is a lifeline for many families. Ed shared that, “the reality is that anybody with a special needs child is a member of a club they never planned to be in,” stressing the importance of a support system. “JF&CS and the people involved with the program helped me with a roadmap, and without that roadmap, I don’t know how you get this done.” Our family navigators are able to help families who have a loved one with a disability, at any stage of their lives. For more information, visit our website at www.disabilitylifespansolutions.com or call us at 781-693-1216.