What is ordinary life like for disabled children and their families in Pennsylvania U.S.A.?

The following story is deeply disturbing, not only because of the individual circumstances but because it seems that the family had a least two disabled children who didn’t go to school and who seems to have received no other services. Other reports mention at least one other child who is deaf. How can one of the riches counties in the world allow families to live like this?

This story has a particular resonance for me because my son Shaun has the same syndrome as the dead child. Shaun was very violent and difficult to manage as an 8 year old, but he attended a special school; attended a special adventure playground on Saturdays and during school holidays; and was a member of the Boys’ Brigade. Our life was difficult but service were there in the UK.

The mother of an 8-year-old Pennsylvania boy whose decomposing body was found on the third floor of their home said Saturday she didn’t know he had died until noticing the smell.
Kimberly Tutko said her husband was the primary caretaker of their mentally disabled son, and he waited several days to tell her the boy had died, Pennlive.com (http://bit.ly/1rXiJbV) reported. Police were called to the home Friday and found the boy’s body.
Police charged Jarrod Tutko, 38, on Saturday with child endangerment, concealing the death of a child and abuse of a corpse. Court records do not list an attorney for him.
Harrisburg police said in a statement that Tutko informed his wife about the death of their son, Jarrod Tutko Jr., “when the odour of decomposition became too strong.”
It’s not clear how the boy died. An autopsy is scheduled for next week.
The couple’s five other children were placed in protective custody.
Kimberly Tutko told Pennlive she understands people will find it difficult to believe she did not know her son was dead.
She said her son was severely mentally disabled and often difficult to control. He would rip up the flooring and carpeting of his bedroom, smear his feces on the floor and walls, and refuse to wear a diaper, she said. He had Fragile X syndrome which can cause severe intellectual disability and behaviour which is very difficult to manage.
He lived on the third floor and was primarily cared for by his father, while she looked after another disabled child who requires round-the-clock care and stays on the second floor, she said.
“My daughter relies on me,” Kimberly Tutko said. “I take care of her and my husband takes care of Jarrod Jr.”
Kimberly Tutko said her husband told her their son died Tuesday.
“I said to him ‘Why didn’t you say anything?'” she said. “He said he was too afraid to say anything because of other kids in the house.

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2 thoughts on “What is ordinary life like for disabled children and their families in Pennsylvania U.S.A.?

  1. I think this story and the previous article about changing the law to prohibit abortion on the grounds of potential disability really resonate together. Whether we like it or not, our global society is not an equal place, nor is it one where all societies are equipped to deal with the challenges presented by severely disabled children and adults. Until one could confidently say that any society was able to deal with any level of disability equally, at the macro or micro level (i.e. service delivery is equal in any part of a country and available to all, and parents and disabled people are positively enabled to access all of the services they may require throughout their lifetime), there must continue to be a consideration about quality of life for individual cases. It is one thing to say that ‘all life is equal’ and therefore abortion on the grounds of disability is wrong, and another to take a realistic look at the potential society that a disabled child will be born into and take the harder decision to say do I have the right to inflict this potential inequality and suffering on a new life. I love the work I do with young people who have severe learning and often physical disabilities, but I have met people through out my career for whom the quality of their lives is debatable and I hope if I were faced with a choice of continuing a pregnancy knowing my child was to be severely disabled and in pain or discomfort for most of his/her life, I would be brave enough to make the same decision as Hilary Freeman and other women like her.

    • Many thanks for such a perceptive and thoughtful comment. I was brought up against some harsh realities when I was working in a very impoverished part of rural China. I was running a major training programme for professionals working with disabled people and was surprised to find that many of them did not know what Down’s Syndrome was. I found some slides to show them. ‘Oh’,said one of the participants.’We don’t feed babies like that. Can they really grow up?’ I was shocked but on thinking about it I realised that having a family member who not only could not contribute but would consume scarce resources such as food would place the whole family at risk of starvation. They couldn’t take the risk. Other obviously disabled babies are also not fed.

      I am glad that I have never had to face any of the difficult, soul-searching decisions that others have to make. I hope that if I had to do so, I would be able to focus on the life, or potential life, of the person with a disability and not on the philosophical standpoint which I have the luxury of being able to hold.

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