Single mom with intellectual disability is raising daughter

‘A lot of my friends don’t have a mom who is always there for them the way my mom is for me. I’m so lucky.’

From People magazine (on newsstands) and NBC Philadelphia:

Bonnie Brown, a Pennsylvania single mother with a developmental disability, is raising her 12-year-old daughter with the help of a team of support staff. Together, Brown and daughter Myra demonstrate a new face of parenting: adults with intellectual disabilities who are raising children on their own.

‘Parents come in all shapes and sizes,” says Sandra Azar, a psychology professor and parenting expert at Penn State. “The truth is adults with ID can parent.”

The 2005 U.S. census found 132,200 people with intellectual disabilities caring for children in their homes, although experts believe the real number is much higher.

Writing in the Archives of Disease in Childhood (subscription required for full text), Dr. Brian Skotko reports that the number of babies born with Down syndrome has been steadily decreasing around the world as prenatal testing and selective termination have become more widespread.

Skotko reports that a trend toward later childbearing in the United States would have been expected to cause a 34 percent increase in the number of babies born with Down syndrome between 1989 and 2005 in the absence of prenatal testing. Instead, there were 15 percent fewer such babies born, a decrease of 49 percent between expected and observed rates.

With new and more sophisticated prenatal tests expected soon, Skotko called on the medical community to address the ethical questions raised by medical technologies that allow nations to decide what forms of human genetic variation are valued. He urged the medical community to:

– Develop guidelines for delivering a diagnosis of Down syndrome;

– Assemble current and accurate information on Down syndrome, in collaboration with parent support organizations, to be distributed to prospective parents;

– Offer comprehensive training to professionals on how to deliver a non-directive prenatal diagnosis; and

– Develop curriculum to give medical, nursing and genetic counseling students a richer understanding of Down syndrome.

An excerpt:

… In its support for Down syndrome prenatal screening, has the American College of Obstetrics and Gynecology endorsed a climate in which disability discrimination could more easily flourish?

… The age is swiftly coming where not all possible technologic advances may bring welcomed change. Parents who have children with Down syndrome have already found much richness in life with an extra chromosome. Now is the time for the rest of us to discuss the ethics of our genetic futures.

Dr. Brian Skotko is a clinical genetics fellow at Children’s Hospital Boston. ADC is the journal of the Royal College of Paediatrics and Child Health. Press release from Children’s Hospital Boston here.

Full article available for purchase here.

From the Chicago Tribune:

As kids across the nation go back to class, school officials worry about the financial impact of last June’s Supreme Court decision on special education. The ruling allows the parents of students with disabilities to seek reimbursement from their districts for private school tuition, even if they did not first try their public school’s special education programs.

Some educators fear the ruling will strain tight school budgets and pit parents against each other in pursuit of scarce resources. But experts don’t expect a wave of parents seeking to exit public schools, and say the promise of big legal bills and lengthy delays would deter them.

Illinois is already spending more than $180 million annually on private schooling for students with disabilities — a number that does not include students from the Chicago Public Schools.

Parents and disability advocates say the ruling gives parents leverage when districts drag their feet in serving students with disabilities or use overly narrow criteria to determine eligibility.

Funding shortfall, lack of coordination blamed

From the [Toronto] Star:

The government ombudsman in Ontario, Canada, has found that some two dozen families are living in fear that they will be forced to surrender custody of their children in order to obtain care for them.

The parents say they have been told that there is no money left in the government fund designed to support home care for the children, who have severe disabilities, but they can get services if they surrender their parental rights to the Children’s Aid Society.

“No one should be forced to give up their child,” said one parent. “This is horrible.”

The report by ombudsman André Marin calls for reform to protect parental custody rights and secure funding to care for the children at home.

UPDATE: Where’s Ontario’s humanity, mom asks — [Toronto] Star

From the Orlando Sentinel:

The parents of an 8-year-old Florida boy with autism have decided to move their family to western New York in search of a better public education. For their son, the mom says, “We’d do anything.”

Advocates say shopping for better schools has become commonplace among parents of kids with autism, with some families moving across a state and others moving across the country. What they’re looking for: a public school system with knowledgeable teachers and the resources to serve students with disabilities.

The Lexington [KY] Herald-Leader reports that the U.S. Department of Health and Human Services has launched a civil rights investigation into Kentucky’s Medicaid program after a family complained about a reduction in home care services for a man with multiple disabilities.

Creasa Reed, who is herself disabled, filed the complaint after Medicaid cut her son’s budget for in-home care by 40 hours each week. The cuts left Reed and her husband responsible for providing 88 hours of care each week to their 31-year-old son, James, who is described as autistic, bipolar and mentally handicapped.

The Reeds say their son is in danger of being sent to an institution if home care services are not restored.

According to a June 12 letter that the U.S. Department of Health and Human Services Office for Civil Rights sent the Reeds, the office will be investigating whether state Medicaid officials acted appropriately when they cut James Reed’s services without considering that Creasa Reed has a disability and might not be able to provide 88 hours of care.

See also: Report from WKYT-TV

From the [Toronto, Canada] National Post:

Barbara Farlow and her husband Timothy are facing what is expected to be the end of their legal challenge to Toronto’s Hospital for Sick Children over the 2005 death of their daughter Annie, who had Trisomy 13. If a judge rules today that the case cannot be heard in small claims court, as expected, the Farlows have said they will withdraw their challenge for lack of funding.

Barbara Farlow has claimed that the hospital denied Annie proper treatment, issued a “do not resuscitate” order without her parents’ consent, and gave her a lethal dose of painkillers as part of  an unspoken policy to deny life-saving treatment in the case of infants with genetic disorders.

She says she wishes not to blame doctors but to provoke a broader discussion about the discriminatory policies used to treat children with disabilities.

[Barbara Farlow] said the trend in genetic screening for birth defects is “discriminatory,” in that people who choose to terminate genetically abnormal pregnancies are offered care and support, but those who choose not to are “on their own.” Once Annie was born, she alleges, she was falsely told doctors would provide life-saving care for her respiratory distress and other ailments related to Trisomy 13, when in fact, she alleges, they intended to let her die naturally.

Earlier posts here and here.

(Photo from the National Post)