Category Archives: Special Health Care Needs

Proponents of ABLE Act Speak out

Advocates of the Achieving a Better Life Experience Act of 2013 (ABLE Act) are speaking out in an effort to get it signed into law:

“My name is Sara Wolff. I am a 31 year-old from Moscow, Pennsylvania, who happens to have Down syndrome but that doesn’t stop me from achieving “my” better life. I work as a law clerk and also at Keystone Community Resources in the Office of Advocacy. I am a board member of the National Down Syndrome Society (NDSS). I’m calling on Congress to pass the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647), a bill that will help individuals with disabilities to save for their futures.

I’m 31 years old, and I happen to have Down syndrome. I have two jobs, and lead an independent life, however, when my mom died suddenly last year, things got a lot harder for me and my family. I want to support myself and save money for my future, but if I save more than $2,000, I’ll lose the benefits I depend on like Medicaid and Social Security.

That’s because of a law that says that people with disabilities like me can’t have more than $2,000 in assets or we risk losing the benefits we need to live. For me, living on my own, that means I can’t even save enough to put down rent and a security deposit on an apartment. This law keeps me dependent on other people, and that’s really scary now that my mom is gone.

But, there is a solution: the ABLE Act.

When the ABLE Act passes into law this year, it will change my life forever. I lost my mother this past year, Connie, to a sudden, rapid illness. With my whole life ahead of me, I need an ABLE account to plan for my future. And, I am not alone, like most individuals with disabilities, people with Down syndrome and other conditions are out living their parents.

Read the rest of the post and view the petition here .

This video from Our Special Voice explains the ABLE Act in a little more detail:

Nemours Develops Transition Video Series for Youth with Special Health Care Needs

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:

Legal

Residential

Vocational

Medical Self-Management

Read the article here (published on PR Web, January 21, 2014)

 

Challenging Transition to Adulthood for Marylanders With Disabilities

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.

On transitioning a teen with special needs into adulthood

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.

 

 

Teens with cerebral palsy face uncertain transition into adulthood

B.C.’s pediatric system assigns teams to deal with the health, financial and other needs of children with cerebral palsy. At age 18, they are cut adrift to muddle through an unfriendly adult system that spreads programs across several ministries

A look at British Columbia’s transition services for youth with cerebral palsy  in the Vancouver Sun , October 4, 2013:

At age 18, Lauren Stinson faced the typical issues of people her age — social life, educational choices, finding a career. But Stinson, who has cerebral palsy, also faced another challenge — adapting to life without a medical support team.

As a child, Stinson had a host of medical and social services professionals working to manage her health. But B.C.’s pediatric medical system cuts people loose at age 18 and there is no adult equivalent in B.C. to that team-based pediatric system.

Stinson, now 24, was born two months prematurely after being deprived of oxygen in the womb. She was diagnosed with spastic diplegic cerebral palsy at birth, a neurodevelopmental disorder that affects her entire body.

….the province developed a strong system of medical care based in the pediatric system and facilities at BC Children’s Hospital in Vancouver. Pediatric support teams may include physicians, nutritionists, orthopedic surgeons, and occupational and physiotherapists.

But the health care system has not kept up with these children as they become young adults, with adult interests in such things as jobs and relationships. At age 18, they must transition to the adult health care system and find, on their own, a new team of support workers and doctors — or not. Provincial government funding for children with disabilities, the At Home Program, is simultaneously cut off.

The transition does not always go smoothly, Lauren said.

Continue reading here.

Anne Sullivan: An Early Transition Teacher

Transition may be something that has come to the forefront of the Special Education world, but it’s not something new.

Every June, the world celebrates the anniversary of the birth of Helen Keller, acclaimed blind/deaf/mute woman who captured the world with her successes despite her disabilities.

Anne Sullivan

While Keller developed the fortitude and self-determination to pursue her dreams and goals, much of the credit goes to her lifelong teacher, Anne Sullivan, who also struggled with a vision impairment. What she did to prepare Keller to be a productive citizen may not have been called “transition”, but that’s exactly what it was.

At only 21 years of age, Sullivan showed great maturity and ingenuity in teaching Keller. She wanted to help Keller make associations between words and physical objects, and worked hard with her rather stubborn and spoiled pupil. After isolating Keller from her family in order to better educate her, Sullivan began working to teach Keller how to communicate with the outside world. During one lesson, she finger-spelled the word “water” on one of Keller’s hands as she ran water over her student’s other hand. Keller finally made her first major breakthrough, connecting the concept of sign language with the objects around her.

Helen Keller

Thanks to Sullivan’s instruction, Keller learned nearly 600 words, most of her multiplication tables, and how to read Braille within a matter of months. News of Sullivan’s success with Keller spread, and the Perkins school wrote a report about their progress as a team. Keller became a celebrity because of the report, meeting the likes ofThomas EdisonAlexander Graham Bell, and Mark Twain.

Preparing students for life after high school: Florida School for the Deaf and Blind

This high school program is doing some amazing things to prepare students with visual and hearing impairments to life after high school.

We Connect Now: dedicated to uniting college students with disabilities in access to higher education and employment issues.

We Connect Now features

We Connect Now is dedicated to uniting people interested in rights and issues affecting people with disabilities, with particular emphasis on college students and access to higher education and employment issues.

We Connect Now , founded in 2008 by Gabriela McCall Delgado, features stories and news from all over the globe by and about students with disabilities and their successes and challenges in college.  It’s a great resource and network for students.

Read more about We Connect Now here.

Transition Planning for Adolescents with Special Health Care Needs and Disabilities: Information for Families and Teens

A Massachussetts Children’s Hospital document from 2000 offers information on the unique transition needs for students with disabilities who have special health care needs.  It contains advice for families and teens alike.

The journey to adulthood for a child with special health care needs or disability is filled with joys and challenges — as it is for any child — just more so. From the day the special health care need is known and onward, family members must learn new vocabulary, new techniques and procedures. They meet doctors and other health providers they may never have known even existed. They learn about and become connected to organizations, programs and people in their community whose path they had never crossed before. They even learn about laws unknown to them earlier.
Life can become more than busy as families work to get the best for all their members. As these full days unfold, our children are entering their adulthood — an adulthood that should offer them the opportunities, pleasures, and challenges available to anyone.
This booklet has been developed for families to help you prepare together for adulthood. Just as families have had to spend more than the average amount of time attending to their young child’s care, the transition to adulthood will be best accomplished if families devote extra effort and energy to that transition. This booklet has been written to help and guide you — to give you the information, ideas, tools, and resources you need along the way.
The booklet covers four major areas of adulthood:
♦Health care
♦Education
♦Employment and
♦Recreation
There is information for parents and especially for teens. Review it together and individually and keep it handy for frequent use.
Adulthood does not happen overnight, nor does preparing for adulthood. We recommend that you work together starting when your child is 14 years old.

Read more here.