By Maryalice Byrnes
The idea for the Facebook page, New Jersey Parents of Developmentally Disabled Adults, started off as a desire to provide a connection among parents and guardians in New Jersey who might also be feeling alone, frightened and without hope.
Driving home after yet another behavioral incident with my autistic adult son, the feeling of isolation was pervasive and the desire to find a way to connect with others overwhelming. The mission statement was simple: a community of parents and guardians where one can find information, support, compassion and a caring community.
Almost five years later, that goal and so much more has been achieved. Our followers in NJ now number over 3,000 and last month we expanded the coverage area to New York, Pennsylvania, Massachussets, and Connecticut, with more to come. These new pages will hopefully develop organically and we would love to see people from these states get involved—join a page, write an opinion piece, and most importantly, spread the word. All pages will have the same format, the name of the state followed by “Parents of Developmentally Disabled Adults.”
Massachussets (to come)
We also have a corresponding website njpdda.com with some novel features. The first is a “How To” section, so if you’re just beginning this process we’ve provided step by step-by-step guidance. The second innovation is a platform for rating many of the existing group home agencies in the state. This is still being developed and is not yet perfect. We’d love to develop one for each state, but help would be needed.
Laura Kelly is the legislative representative who keeps us informed and aware about all that occurs on that level. She serves on various committees and councils and has been instrumental in spreading our message and knowing all the state and local legislators.
But we can and must do more. Our page deals specifically with adults. Most parents quickly find out that once their loved one ages out of their educational supports, it’s like falling off a cliff. Help is hard to find, especially if your loved one is behavioral.
We have experienced it all, from institutional settings, to group home agencies and self-directed care. We encourage you to contact us to get involved. Find our pages and like them. Contact us at: njpdda@gmail.com. We can unite and make a difference.