A new video series for youth with special health care needs has been launched by Nemours Alfred I. duPont Hospital for Children. The series focuses on transition to adulthood for youth who face taking charge of their own medical care along with seeking employment and living independently.
The transition from adolescence to independent young adulthood can be an especially challenging time for those with special health care needs. A great deal of planning and forethought is needed to help these patients move from pediatric to adult health care providers, from education to employment and from their family home to independent living when possible.
To help patients, families and caregivers understand the many important issues they face prior to and during this period of transition, Nemours has developed a series of videos now available on YouTube. The videos, made possible by a grant from NYMAC, cover four main areas:
Read the article here (published on PR Web, January 21, 2014)
Capital News Service, December 4, 2013
FREDERICK – Like any mother of an active 20-year-old, Frederick County resident Michele Baisey has her hands full. But in addition to helping her son, Troy, balance school, work and home life, she faces a looming deadline that is unsettling for many parents in her position.
Troy Baisey, who was born prematurely, suffers from cerebral palsy and hearing loss. He is considered a “transitioning youth,” which means he will soon lose the guarantee of state assistance.
In Maryland, young adults with disabilities are entitled to public education until age 21. After that, families must apply for support through various programs and organizations. Services and financial assistance are contingent on eligibility requirements and the availability of funds.
It can be a frightening and overwhelming time for students with disabilities and their families, who are used to the structure and support of the public school system, said Mary Scott, a transition resource teacher for Baltimore County Public Schools.
“There’s no entitlement after you leave school,” Scott said. “It’s hard for parents to wrap their minds around that.”
Michele Baisey recalled the stress and pressure to complete multiple aid applications in a short amount of time starting when her son was a junior in high school.
“It was very overwhelming because it was so much all at once, and the applications are not short or by any means easy,” she said. “It’s looking back from birth and documenting and justifying everything medically … down to every doctor, every hospital, every medicine.”
As his mother navigates the state system, Troy Baisey is figuring out what he wants his future to look like. He had to modify his goals several times, like when he found out he would not be able to graduate high school with a diploma, or when he was told he may not be able to pursue his dream job of becoming a priest.
Posted in Developmental Disabilities, Employment, Family Involvement, Independent Living, Intellecutal Disabilities, Inter-Agency Collaboration, Medical Health, Post High School Programs, Program Structure, Self-Determination, Special Health Care Needs, Student Development, Student-Focused Planning, Transition Services
Love That Max Blog guest post (January 2013): A parent’s experiences and perspectives on preparing a child with a disability for adulthood.
This guest post is from the awe-inspiring Laverne Bissky, mom to Kasenya, who has cerebral palsy. Laverne is an inspirational speaker, writer and coach who writes at No Ordinary Journey. Along with her husband, son and Kasenya, the family has backpacked in North America, Australia, South East Asia, Africa, Europe and South America. She recently created a cookbook that benefits programs the couple run for kids with special needs in Vietnam.
The transition from the old year to the new is a good time for reflection. As parents we usher our children through many transitions but as parents of a child with a disability trepidation is often part of that process. Perhaps the scariest is the transition to adulthood which will happen soon for us since my daughter will be turning 18 in 2013. As I reflect on that, I realize that whether we thought of it this way or not our preparation started from the day Kasenya was born.
The transition to adulthood involves many decisions. Decisions need to be made about guardianship and applications made for funding so that Kasenya can continue to have the services that she needs. Later we will need to think about where she will live as an adult. The least urgent but most important questions is what she do with her time once she is no longer in school. I have always hoped that as an adult she would be as independent as possible and I knew in my heart that she would contribute something positive to the world, but given the severity of her CP what would that be? That question is beginning to answer itself.
Continue reading the post here.
Read more about Kasenya and her family at their blog, No Ordinary Journey.