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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Should disability be grounds for abortion?

On March 26, North Dakota became the first US state to prohibit abortions after detection of “either a genetic abnormality or a potential for a genetic abnormality,” with this defined as “any defect, disease or disorder that is inherited genetically”. Down’s syndrome is specifically cited in House Bill 1305.

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Some disability advocates have hailed the law as a step forward to create a better society for individuals with disabilities. As Mark Leach, a lawyer and parent of a child with Down’s syndrome, writes, banning the discrimination of a child with disabilities even before she or he is born is an example of how “public policy starts with the statement that discrimination is prohibited and then states enact policies to create a society where discrimination is no longer a barrier.”
A result of passing such laws could indeed be “to increase the number of advocates for … social supports” – for education and other support services for individuals with disabilities, he argues.
Knowing that society is not a place where individuals with disabilities are fully supported and integrated is why many women have terminated their pregnancies when they learn that their child has Down’s syndrome,

Alison Piepmeier, whose 4-year-old daughter, Maybelle, has Down’s syndrome, is writing a book on prenatal testing and reproductive decision-making. In a preview in the New York Times, she shares that the many women she has spoken to all emphasized that “abortion was an incredibly painful decision,” but one they chose in no small part because “they recognized that the world is a difficult place for people with intellectual disabilities”.

As parents of children with Down’s syndrome, Becker, Leach and Piepmeier have all been
confronted with the news that their baby had genetic abnormalities and chosen to go ahead with the birth.

disabled baby 1

However, the mother of another severely disabled child reportedly said she would rather have aborted her child than face the life they had after her baby was born.
Joanne Chinnock claimed £500,000 compensation because she says doctors didn’t warn her that she had a chance of her baby being born handicapped. Her daughter, Bethany Chinnock-Schumann, was born with an extremely rare chromosomal disorder which left her nearly blind and in almost constant pain. She died aged 11. They want compensation for the damage done to their lives, their careers and the cost of raising their child.
Another mother, Hilary Freeman, says she had an abortion on doctor’s advice and thinks that a life of suffering is no life at all for a child. She has no regrets about her decision. Hilary had an 8-week scan at her first pregnancy which showed the embryo wasn’t developing properly. A later scan at 24 weeks showed the child, a girl, had a very rare condition which would have given her all kinds of physical and mental disabilities, and she would have been in pain – if she’d survived.
Hilary sought as much advice as she could about the diagnosis, an agonising situation knowing she very much wanted the baby she could already feel kicking. .She decided to terminate the pregnancy, and has no regrets, but says she doesn’t believe all disabled children should be aborted – she thinks it depends on the condition involved and quality of life the child would have. She would not want any child to suffer as hers would have.

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But should it be possible for a woman to make such a decision? Is it discrimination? Will the North Dakota legislation challenge discrimination or will it condemn some children to lives of suffering?

What is the legislation in your country?

How would you make such a decision, if you could make it?

Do you have a view about how such a decision could have been made about you?