Parents and educators know that children with Special Needs have gifts and talents and it’s just a matter of unleashing their full potential and making sure that parents and teachers have the right information, tools, and support to help the children flourish.On this episode of Family Comes First, “Parents Know Best” we meet with Christian and Terrie Killoran. Christian and Terrie have a son, Aiden who has Down syndrome. On the show, they share with us the story of their son, Aiden and their battle with the school district to allow Aiden to continue his education at the school that would be the normal path for him.

Aiden had been attending elementary school and his parents were planning on sending him to middle school in the same district however, that school does not have a program for children with special needs and will not accept him. This means that Aiden will have to attend a school in a neighboring community, one separate from his classmates and siblings. The larger issue they discuss is his future success within his community. As parents, they want Aiden to flourish in his community by getting a job once he graduates, developing relationships with people in his community and being successful as a contributing member of the community. They fear if he attends school outside of his community he will not have these opportunities.

During this show, we also skype with Sara Hart Weir, the Executive Director at the National Down Syndrome Society. Sara explains, “…people with Down Syndrome can live long healthy lives when they are given the extra support when they’re able to go to an inclusive school , like what we’re pushing for Aiden, they’re able to work in the community, go to post-secondary education and pursue their own hopes, dreams and aspirations, just like everyone else.”

Elizabeth Einhart, a special education teacher with a masters in special education joins us to give the educators perspective, having the knowledge of what is necessary to educate children with special needs. Elizabeth clarifies how in an integrated class setting, individualized education plan’s (IEP’s) helps provide some additional support to bridge the education of a student with special needs to the general curriculum. She also expresses how the whole point of having an integrated classroom setting is to expose the children to real life experiences and teach them about compassion and kindness.

Adrienne Arkontaky, a special needs attorney with the Cuddy Law Firm provides further insights and clarification on these issues discussed during the show.  Adrienne explains, “The responsibility of the school district is to provide a free appropriate public education at no cost to the families and what the Individuals with Disabilities Education Act says is that the school districts must provide an education in the lease restrictive environment and to the greatest extent possible in a community school.”

Every child is unique. Parents need to be engaged and proactive to ensure their child with special needs is afforded every opportunity to realize their full potential.

Resources

Cuddy Law Firm, P.L.L.C
Cuddy Law Firm, P.L.L.C is a Special Education Law Firm who specializes in providing comprehensive legal services to families of individuals with special needs.

 

National Down Syndrome Society

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

As a parent, from the moment your child enters the world, you strive to provide the best life for them. There are always obstacles to overcome in day-to-day life. However, when a parent learns their child is medically fragile, these day-to-day activities become additionally challenging. Due to medical research and advances, many of these children can live at home, but not without significant challenges to overcome.

In this episode, we meet Jenny and Darin Iacobelli. Jenny and Darin’s daughter, Nola was diagnosed with Cardiofaciocutaneous Syndrome at just 1 year old. The disease is very rare—only 400 children in the world have been diagnosed. The Iacobelli’s are able to maintain their family and lifestyle despite the stress and challenges. They are truly role models to families everywhere.

Resources

In 1992, Angela’s House, a non-profit organization, was created by Bob and Angie Policastro; their goal was to improve the lives of medically frail children and their families. Angela’s House currently offers a wide variety of services to support medically frail children, both at home and in a group home setting.

We kick off this brand new season of Family Comes First™ by visiting with the founder and Executive Director of Angela’s House, Bob Policastro, and Anne Bingham, whose daughter is a resident of Angela’s House in Smithtown.

Bob shares with us how, 23 years ago, when his daughter, Angela, was born, he saw the lack of places and resources that could provide the proper care for medically frail children in Long Island, NY. Angela’s House was created in his daughter’s memory to ensure children receive the proper care at home and don’t need to be institutionalized due to lack of resources.

Anne explains how, prior to arriving at Angela’s House, horrific images came to mind when she thought about putting her daughter in a home. After visiting the house, she realized how beautiful and inviting it was, with loving and caring staff.

Resources

In 1992, the non for profit Angela’s House, was created to offer families and professionals an agency to call to help medically frail children and their families. Angela’s House has helped to simplify home care options for families by coordinating the extensive array of services needed to support medically frail children at home.

Until the 1980s, medically fragile children were most often cared for in hospitals and then institutions. Deinstitutionalization, which started with Willowbrook, resulted in children being moved into community settings. In addition, advances in healthcare technology have enabled more children with special needs to leave hospitals.

More and more children are leaving hospitals which puts extreme pressure on these families to provide for their children who require more medical equipment and 24 hour specialized care. This all comes at a very high cost, emotionally, physically and financially.

Our show takes a look into the lives of the Altbacker Family. You will meet Liz and Chris Altbacker and their three beautiful children, Kiera, Sydney and Timmy. Their oldest daughter, Kiera has multiple challenges that require constant medical care. She is “medically fragile.”

The Altbackers brought Kiera home and their lives have never been the same.
Not only do we meet the Altbacker Family, we also have the privilege of hearing from Bob Policastro, the Founder of Angela’s House, and one of my law firm’s partners, Frank L. Buquicchio, who shares their insights about services and resources including specifics involved in special needs planning.

The topic of this episode is very personal for me and my wife as we brought our medically fragile daughter, Theresa, home to live with us. When a child has profound disabilities and complex medical needs, providing the needed round-the-clock care can be exhausting and overwhelming. Though it sometimes may seem daunting at times, with the love and support of family, children who are medically fragile children can grow and thrive at home. The Altbacker family shows all of us that a loving family is often the best medicine.

When my daughter was born, there was no Angela’s House that helps care for these children living at home with parents or in special homes that offer 24 hour nursing support. Today, with the help from organizations like Angela’s House families can continue to provide a loving home for their children.

In Theresa’s honor, we founded the Theresa Foundation which supports music, dance, art and recreation programs and have opened the Theresa Academy of Performing Arts for children with special needs in Lido Beach, New York. Find out more by visiting www.TheresaFoundation.org.

We are ALL one big family and we must do our best to help each other. Learn more about Angela’s House at www.angelashouse.org and for more information on resources for special needs visit www.VJRussoLaw.com.

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Resources

In 1992, the non for profit Angela’s House, was created to offer families and professionals an agency to call to help medically frail children and their families. Angela’s House has helped to simplify home care options for families by coordinating the extensive array of services needed to support medically frail children at home.