Speaking out for People with
 Intellectual and Developmental Disabilities

"My Life as an Advocate"

by David Hart, VOR Board Member
The Voice * Winter 2012

   I know when my parents became advocates for individuals with ID/DD.  It was March 4, 1964, when their son, Christopher, my older brother was born.  My father led the charge, and my mother was the support needed at home.  I do not believe my father realized the depth to which his advocacy would take him, nor did he realize the impact his advocacy would have on me.

   My brother suffered from Hydrocephalus, which simply is fluid on the brain that does not drain naturally, causing severe headaches and brain damage. At his best, my brother’s cogitative level was no more that 12-18 months with a rudimentary vocabulary of about 20 words.  Eventually, due to many physical complications of this condition, Christopher was wheelchair bound from about twelve years old.

   For this article, I have been asked to offer a sibling’s perspective and share when and, more importantly, why I became an advocate - first for my brother and then for all individuals with ID/DD.  The why is simple. I firmly believe that as human beings it is our duty to help those that are less fortunate than us.  The when? That is a little more difficult to answer, although, as with most people who are passionate advocates, I did have an “AH HA” moment.

Sibling Caregivers Find Responsibilities A Struggle

Disability Scoop * December 5, 2012

About half of adult siblings of those with developmental disabilities either are or plan to be the primary caregiver for their brother or sister, but many are unprepared for the responsibility, a new survey finds.

The national poll released Wednesday indicates that among adult siblings of those with a disability, 23 percent are currently serving as primary caregivers while 1 in 3 expect to take on that role in the future. And many are finding the experience to be daunting, fraught with emotional and financial challenges and little support.

The survey conducted by the market research firm Ipsos on behalf of Easter Seals solicited feedback from 351 brothers and sisters of people with developmental disabilities from across the country. A control group of nearly 1,400 adults with typically developing siblings was also polled.

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My Sister Lauren

By Linda Lotzi, VOR Board Member
The Voice, Summer 2012

     In 1998, I became the primary contact and the court appointed personal guardian of my sister, Lauren. Lauren’s home for the last 41 years has been White Haven Center (WHC), an Intermediate Care Facility (ICF/MR) in Pennsylvania.  Our parents wished for Lauren to reside at White Haven as long as she is safe and happy. 

      Since I was young, I have experienced what it is like to have a sister with severe profound intellectual disabilities. I felt the struggles my parents had with Lauren when we were young. I remember many times when Lauren would fall to the floor and have a seizure.  I was only five years old.  I remember how hard it was on our family when Lauren was brought to White Haven Center to live.  I was very sad and did not understand. Back then there were no supports in place to help family’s keep their loved one home.  Society dictated then that facilities were the best way to support a family with a child that has disabilities. Today, forty years later, society is still trying to dictate what is best for my sister and her friends.

Impact of Autism on Siblings

Source: Washington Post, September 3, 2012

One of the least fun moments I recall from my years of growing up with an autistic brother was when he bit me on the cheek — just in time for my class photo. I was 12 and he was 11. I went into school with visible bite marks, and when they sat me in the chair for my solo shot, I told them that the cat had done it.

That’s one of the bad stories. As for a good one .?.?. um, to be honest, I have a hard time coming up with much.

I know that people are warmed by stories of siblings who selflessly shower the disabled child with love, attention and support. I think that’s great, too. And it’s for real for some siblings. But for many of us, relating to a sibling who is on the autism spectrum can be complicated. The challenges to a warm, close relationship are many. Normal sibling rivalry doesn’t work, because it can never be a fair fight.

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Life with Jordy: A Younger Sister's Perspective

By Marlo Engels
The Voice * Spring 2012

I have often been asked, "What was it like having a sibling who was so profoundly handicapped?" My answer? It didn't feel like anything unusual. For me it was completely normal. People might think that sounds like an odd answer, but because I was born 3 years after Jordan (or Jordy as he was often referred to) I simply accepted that he was, the way he was.

Read more.

Read related perspective submitted by Carly Engels, Jordy's older sister in "Thoughts on a Life with Jordy," The Voice, Winter 2011

Three Siblings’ Perspective

By Maureen Durkan, Anne Pichette and Mary Durkan
The Voice * Winter 2011

Our “little sister” Sharon is the youngest of seven children, four girls and three boys. She is the light of our lives and has taught us about love, compassion and giving to others. She does not know what hate is; she is innocent, sweet and kind.

Our parents wanted to keep Sharon at home, but she took up most all of their time and they had six other children to raise. Sharon needed 24/7 supervision; understandably, her high care needs were stressing the family out.  We suffered from sleep deprivation in those days.

Sharon had one out-of-home placement before she went to live at Fircrest ICF/MR (“Residential Habilitation Center”(RHC)), where she has been since 1974.

None of us will ever forget what a challenge it is to care for our sister who is profoundly developmentally disabled.  We don’t want other individuals, or families to suffer without proper services for their loved ones. Our state RHCs are a godsend. We need them as part of our continuum of care for all citizens with developmental disabilities to be able to access. We advocate for these services all the time with VOR, Friends of Fircrest and our state organization ActionDD.

Now it is our turn.  Read More.