Seminar: Tools for handling disabilities.
ALAN J. HEAVENS, INQUIRER STAFF WRITER
Saturday, November 14, 2015
To understand the day-to-day lives of parents of children with disabilities, Francis X. McNesby offers this study of a group of mothers raising children with autism.
The study, reported in the Journal of Autism and Developmental Disorders, measured the levels of cortisol, a hormone "that is released in response to increased levels of stress," said McNesby, a pediatrician with the Center for Children and Youth with Special Health Care Needs at St. Christopher's Hospital for Children in Philadelphia.
While stress levels tend to rise and fall during the day, the study found the women suffered from "chronic stress - the same patterns as soldiers in combat," McNesby said.
That level of stress has particular meaning for parents of children with autism in this region. New Jersey has the nation's highest rate of autism, with one in 45 children diagnosed - a rate that includes one in 28 boys, the Centers for Disease Control and Prevention reported in March 2014.
The 2014 Pennsylvania Autism Census Update revealed that the number of Pennsylvanians with autism receiving services has reached more than 55,000 individuals - triple that of 2009.
'A better job'
"Something is broken," McNesby said, referring to the mothers' stress levels. "We need to do a better job dealing with special-needs' health care."
McNesby was one of a number of experts at a Saturday seminar - marking the 25th anniversary of passage of the Americans With Disabilities Act - titled "Tools for Meeting Life's Challenges." It was held at the Sheet Metal Workers Union No. 19 Hall in Philadelphia.
The sixth-annual seminar was designed for families and caregivers of children with cerebral palsy and catastrophic physical disabilities, as well as for service providers.
"Every caregiver and parent here today should leave with the message not to give up and that they are not alone," said Joseph Scullin, director of social services for Tools for Meeting Life's Challenges, which has a website - www.toolsmlc.org - that provides a road map for dealing with the health-care system.
"Seek help when you need it," he said. "Even if you are highly skilled as a parent, you still can lose" when you seek the assistance from the government for which you are eligible.
Stewart L. Cohen, a lawyer with Cohen, Placitella & Roth of Philadelphia, said there were a "number of excellent resources available to provide information to assist and advocate for the disabled."
"Don't only rely on what you are told by the government and service providers," Cohen said.
The federal Individual With Disabilities Education Act of 2004 governs how states and public agencies provide early intervention, special education, and related services to more than 6.5 million eligible infants, toddlers, children, and youth.
But, said Leah Batchis, a partner in Batchis & Nestle of Bala Cynwyd, a special-education law group, the act doesn't always guarantee compliance.
"The school district has to follow the individual educational program [IEP] that is established after all areas of the suspected disability have been evaluated," Batchis said, "including testing of social and emotional functioning."
"If the IEP is not followed, the district is in violation of the law, whether they have the staff or not," she said. "Special education has to be adapted to your child, and the district must consider your input on your child."
To guarantee the best education for your child, Batchis recommends building a team, which includes not only district staff, but a lawyer or advocate to accompany you to meetings.
"While you are the best advocate for your child, don't go it alone," she said. "Find someone to help you."
And, as McNesby said, "when you build these relationships, you, as the parent should set the tone."
'Decrease the risk'
If the disabled individual needs extensive medical care in a home setting, "you need to get insurance approval up front," said Monica Kondrad, a registered nurse and care coordinator with more than 30 years' experience.
The goal is to "decrease the risk for further disability," she said.
Changes in the law for those with special needs often come with no warning.
Kristen Behrens of the Begley Law Group in Moorestown and Philadelphia, which develops special-needs trusts for clients, said recent changes in Social Security laws affecting these trusts required "us to amend all them to comply."
"And we did," she said.
Read more at http://www.philly.com/philly/health/20151115_Seminar__tools_for_handling_disabilities.html#ECRS8ZbIeJGVaYpP.99