Ensuring Quality and Accessible Care for Children with Disabilities and Complex Health and Educational Needs Proceedings of a Workshop (2016) / Chapter Skim
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2 Perspectives from Individuals and Family Members
2 Perspectives from Individuals and Family Members
Pages 5-16
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From page 5... ...
They laid out what they thought should be done to help people with disabilities lead fulfilling and productive lives. A particular focus of their comments, as noted by panel moderator Stephen Shore, clinical assistant professor at Adelphi University, was "the importance of community -- of advocates, of parents, of professionals.
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From page 6... ...
Jackson's original diagnosis led Hurley to become involved in Autism Speaks, and in 2011, she became the organization's southeast regional autism response team coordinator. After spending years being her own son's advocate, she has been able to help other parents navigate the complex systems involving health care and education.
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From page 7... ...
Autism Speaks has partnered with the National Center for Missing and Exploited Children to provide grants for swimming safety lessons and fencing for Jackson. He needs Project Lifesaver, which is a nonprofit organization that works on tracking technology for the search and rescue of individuals with cognitive disorders, to come to the Hurley's county, but funds are not available for that, his mother said.
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From page 8... ...
His teachers work on life skills and make community trips; his school nurse has received training for mitochondrial disease; and his speech therapist started a buddies group just for Jackson. Many families that call the autism response team are not as fortunate, said Hurley, and Autism Speaks provides special education advocacy resources every day, especially for those in rural communities or who have language barriers.
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From page 9... ...
It was wonderful.' When families call the autism response team, I always encourage our new families, ‘Try to find some other family or a parent in your community, whether it's in your child's class, or it's through an online support group, someone to be able to share these experiences.'" When Jackson was diagnosed in 2007, there was less awareness and acceptance for children with autism. Now that he is 10, tolerance, understanding, and acceptance have grown tremendously, said Hurley.
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From page 10... ...
GROWING UP WITH COMPLEX HEALTH NEEDS Jill Plevinsky, founding chair of the Patient Advisory Council for ImproveCareNow, was diagnosed with Crohn's disease about 20 years ago, when she was 7 years old. Crohn's disease is a chronic autoimmune condition that can cause inflammation anywhere along the digestive tract, resulting in abdominal pain, fatigue, fever, diarrhea, growth delay, and weight loss.
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From page 11... ...
Toward the end of her undergraduate training, she was contacted by a pediatric psychologist she had known through the CCFA about joining a collaborative called the Collaborative Chronic Care Network. The idea behind the network was to improve chronic illness care systematically using quality improvement science, with IBD care as a test case.
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From page 12... ...
All are united by the desire to reduce suffering and increase the potential for leading fulfilling and productive lives. At the time of the workshop, Plevinsky was in her 3rd year as a doctoral student training to become a clinical pediatric psychologist and was doing research on the readiness of adolescents and young adults with IBD who are transitioning to adult care.
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From page 13... ...
The other was as a researcher focused on, as the subtitle of the book I eventually wrote puts it, "A Mother Uncovers the Science Behind Three Generations of Mental Illness." My focus became currently available research and treatment, as well as what I discovered to be the greatly untraveled ground of connecting family history to current mental disorders that cross multiple generations in families. At the age of 16, her son Alex had lost his ability to finish a sentence, get even half a night's sleep, or face his peers at school.
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From page 14... ...
Costello lauded the effects of a 1 percent tax on high-income earners in California that was targeted for a mental health services fund. Those tax dollars supported early psychosis clinics and peer support programs that would not have been funded otherwise.
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From page 15... ...
SUPPORTING PARENTS AND OTHER FAMILY MEMBERS A topic that was extensively discussed during the question-and-answer session was how to address the needs of parents and other family members who are caring for children with disabilities and complex health and educational needs. As Thomas Boat from the Cincinnati Children's Hospital Medical Center pointed out, 40 percent of mothers, for the first 3 years after a child is diagnosed with cystic fibrosis, are clinically anxious or de
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From page 16... ...
In the original psychiatric interview for her son, she realized that she had to do something about her own depression, but she was unable to get help from her son's psychiatrist because she was not his patient. With mental disorders, "it's not that hard to have a referral list ready," she said, since mental disorders are so often a family issue rather than an individual issue.
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