Teaching and Learning
There has been a lot of positive change enacted over the years to provide access to quality health care, education, and increased options for individuals with special needs. However, a lot more needs to happen until people with disabilities are truly valued members of our society. I think of all James has taught me and our family about patience, kindness, hugs and love. As his mother my role is to listen to him and, even though he doesn’t speak in the typical ways, acknowledge and respect him. I know he must be taught to advocate for himself while encouraging and teaching those around him to listen with their hearts as well as their heads.
I spent much of the early years with James in a constant quest for good information. The best training I ever attended was the Massachusetts Families Organizing for Change leadership series (www.mfofc.org). James had a couple of extremely rough years, having been diagnosed with infantile spasms, a particularly challenging type of seizure disorder. He was found to be eligible for respite services through a state agency and they allotted hours of nursing care to him and then suddenly, the hours were cut. John requested an organizational chart to figure out who within that agency was in charge of our family. It was then that we found out about the leadership series through an incredible advocate within the Department of Developmental Services.
Our amazing advocate, Judy Curry, encouraged us to attend the leadership series in Southeastern MA to help us understand the system. It took a tremendous effort to attend the training sessions- they required a commitment of six full days and overnight stays- but we were thrilled with the opportunity. The Department of Developmental Services paid for the training but we needed to find people to care for James and our other children. My friends and a few paid people did two of the weekends and family came in from out of state to cover the remaining weekend enabling us to take this giant step forward for our family.
The Leadership Series
The leadership series gave John and me inspiration, as well as the determination, to achieve a great life for James. We were introduced to other wonderful families dedicated to the same goal. The training focused on providing an overview of how we could make a difference and how to determine what is worth fighting for. It helped us develop a vision and define our values, which gave tremendous clarity and focus about what was most important for James and our family. Lastly, appreciating how the legislative process works and why we need to be active participants in order to impact not only James’ life but to make the world a better place for all.
Empowerment provided the Foundation for us to Achieve our Goal
Getting our priorities right at that early junction helped us seek out opportunities and confidence to speak up and out when needed. With assistance from Judy Curry and Walter Bacigalupo, I was able to bring the MFOFC Leadership Series to the northeast. I am always mindful of a wonderful man I met in this first series who was a widower living with his adult daughter. He told me about his nightmare of not being able to “settle “ his daughter into a supported living arrangement before he died. He hadn’t put anything into place when shortly after the series ended, he died quietly in his armchair. We started planning the first Housing conference shortly thereafter in 1996. This man’s nightmare broke my heart and became a focus for planning for James and others so this wouldn’t happen to anyone else if we could help it.
View the Special Needs Financial Planning upcoming workshops here.