Kids Crusaders Corner

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Matthew is Julie’s 16 year old son and he wanted to share his thoughts this month.

My name is Matthew and I am 16 years old. My brother’s name is Nick and he is 23 years old. Nick was born with Cerebral Palsy and I’ve had the honor to call him my brother. Living with a brother who has special needs has taught me a lot of life lessons. From the memories of us laughing and having fun at the park, to the memories of the trips to the hospital, living with Nick has been a joy ride with lots of ups and downs.

Being the only other son besides Nick in the family, I’ve had to take on the role of the “older brother” (despite actually being the youngest child). I’ve taken a lot of responsibility not just for Nick but also for around the house in general. I get Nick off his dayhab van, some nights I tuck him in bed. We sometimes just like to lay in the living room and watch movies together. I help my mom a lot around the house since we always have way more laundry than average families. My mom and dad both work and I can see how hard it is for them to do everything plus take care of Nick. Sometimes they need a break and I feel bad that they don’t get one. (click here to read more)

 

Nick and Matthew  Matthew and Nick

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Siblings Corner – A sibling’s perspective

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Rachel and Josh

Rachel and Josh Goldstein

I would not be the person I am today if I did not have my brother, Josh. He has an extensive movie collection, loves going bowling and doing arts and crafts and has a very busy social life. He works bagging groceries at a grocery store and also volunteers at a nearby hospital. From my earliest memories of childhood, it was
always Josh and I, side by side. To this day, we talk on the phone daily and spend a lot of time together. Josh also has an intellectual disability.

Experiencing life with an intellectually disabled sibling impacted me from a very young age as it exposed me to the sometimes harsh reality individuals with disabilities face. I witnessed the insensitivity and lack of understanding by non-disabled individuals when interacting with my brother. In grade school I would hear the whispers and snickers of other children and would witness the never-ending struggle for inclusion and acceptance. I observed issues with access to education and the lack of community inclusion. I saw the limited employment opportunities and the attitudinal barriers to hiring individuals with disabilities in the workplace.
While I am an outsider looking in on the experiences Josh has had, experiencing life as Josh’s sister was a formative part of my decision to pursue a career as an attorney and ignited a passion in me to focus my legal career on promoting and advocating for the rights of individuals with disabilities. As Senior Staff Attorney at DIG, I bring forward my experiences and unique perspective as a sibling of a brother with an intellectual disability. As part of our newsletters, we would like to feature a story each month from siblings of individuals with disabilities as a place to share their experiences, increase support to one another and promote the issues important to them and their families. If you are a sibling of an individual with a disability and would like to share your story, please feel free to contact us at debbie@justdigit.org.

Institutionalization of Medically Complex Children

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A.R. v. Dudek – the efforts to give children with disabilities the care they need.

Florida has been home for approximately three thousand children with severe disabilities who require constant nursing care or supervision on a 24-hour per day basis to stay alive. These disabilities could be the result of a trauma, such as a shaken baby syndrome, near drowning, or an auto accident, or could be a condition with which the child was born. Many of these children have tracheotomies, gastrostomy tubes, or ventilators, and as a result of their conditions, most of these children have degrees of developmental or intellectual disabilities.

At least since 2010, it has been the policy of the State of Florida to rely on the parents and caregivers, including siblings, of these children to provide such life-sustaining nursing care to these children, despite the requirement of Medicaid to pay for as much nursing care as is medically necessary. These parents or caregivers are not medical professionals, yet they are entrusted with life sustaining care of their children. These parents are pushed into the position of placing their child in a nursing facility to obtain the medically-necessary services they could not receive in their own homes. As a result, the State of Florida pushed many of these children into institutionalized settings, such as residential geriatric nursing homes or 12-hour pediatric prescribed extended care centers. Due to their efforts, Florida saved over $ 25 million dollars by denying claims for nursing services for our most fragile children in 2011 to 2012 alone. For those children in foster care, nursing homes is the only option because of the lack of medical foster homes.

Disability Independence Group, Inc., the North Florida Center for Equal Justice, Inc. and the FSU College of Law Public Interest Law Center are representing these children to ensure that these families receive services in the most integrated setting with appropriate and necessary supports and services to allow these kids with disabilities to live at home. In the landmark United States Supreme Court case of

Olmstead v. L.C. ex rel. Zimring, the Court recognized that the unjustified isolation of individuals with disabilities is discrimination under the Americans with Disabilities Act. In so concluding, the Olmstead Court found that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” Children should be with a loving family and are worthy and capable of participating in community life. Unlike one’s own family, medical foster home, or even a group home, such restrictive, medically-based nursing facilities lack required integration with other persons, children, and the community.

This action seeks class-wide injunctive relief and requires the states and their agents to (1) provide all children with disabilities the opportunity to receive services in the most integrated settings; (2) make reasonable modifications to the Defendants’ community service system to accommodate the needs of qualified children the opportunity to live in more integrated settings; (3) implement a professionally-adequate screening and assessment process of children in nursing facilities that will accurately identify children with developmental disabilities, including whether they can be appropriately served in the most integrated settings; and (4) for those children who are medically fragile or medically complex, to ensure that they receive adequate nursing care based upon their medical needs and not based on their parents or caretakers schedule, in the most integrated setting.

Every month, our website will update this matter and provide a description of a few of these children and the families that love their kids and care for them. Each of the families have fought for the care that they have and continuously fight for the lives of their kids.

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