Judge says district’s response was ‘grossly inadequate’; Family to get $125,000

From the Charlotte [NC] Observer:

Eleven-year-old Brandon Hawkins and his younger brother Jeremy have Batten disease. The rare neurological condition causes steady deterioration of vision, strength, and mental capacity, and often leads to an early death. It has no cure.

Ever since Brandon was in kindergarten, his parents have been fighting with the Charlotte-Mecklenburg School District (CMS) about his right to special education services. The district said Brandon did not fit in any of its categories. The family alleged discrimination based on disability.

After a federal judge rebuked CMS for what he called “malignant arrogant indifference”, the district settled the case for $125,000. It will also pay almost $64,000 in legal fees. The family has moved to another district where their mother says the boys are thriving.

From the Sacramento Bee:

Parents and disability advocates say they’re worried about the tidal wave of young people with autism who are moving toward adulthood in a society unprepared to meet their needs.

Nationally, it is estimated that some 380,000 people will need extensive adult autism services by 2023, and the pricetag for their care will be in the billions of dollars.

“The financial impact will be huge,” said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. “Many, many people will be living impaired lives, and where are they going to go? Who will take care of them? The challenge will fall largely to family members. As those parents age, they are asking, ‘Who is going to take care of my autistic child after I am gone?’”

See also: Book review of ‘Boy Alone’, by Karl Taro Greenfeld — Paul Collins in the [Portland] Oregonian. An excerpt:

Society makes some strange demands upon autism. We expect a cure: something you rarely hear mentioned next to conditions like Down syndrome or retardation. For them, a sensible emphasis has been placed upon prevention in the future, and respite and amelioration in the present. (more…)

From Business Insurance:

Experts say that sixteen states and Washington, D.C., have mandates for insurance coverage for autism or other developmental disorders, and momentum is growing. Many self-insured employers are also getting on board, even though they are not subject to the mandates.

The driving force behind the changes? Highly active parents.

The Virginia-based Council for Affordable Health Insurance estimates that the autism mandates add one percent to the cost of insurance, and could rise to three percent.

Bills have been introduced in the U.S. House and Senate, but no action is likely until broader health care reform decisions have been made.

From AP/Philadelphia Inquirer:

New Jersey governor Jon Corzine is expected to sign a measure, passed by the state legislature, that would expand health insurance coverage for autism and other developmental disabilities.

The bill would require insurers to cover the cost of autism treatments deemed medically necessary, including behavioral intervention and speech, physical and occupational therapy. The measure would cap coverage at $36,000 annually for patients aged 21 and younger.

If Corzine signs the measure as expected, New Jersey will become the 14th state to mandate such insurance coverage.

From the [Minneapolis-St. Paul] Star Tribune:

Eleven Minneapolis-area counties are scrambling to prop up a regional transportation system for people with disabilities after legislators eliminated its roughly $2.5 million funding. The surprise budget cut takes effect July 1.

The program had arranged for some 220,000 people to go on an estimated million trips to doctors’ appointments and other activities last year.

From the Seattle Times:

The families of three children with Down syndrome have filed a suit in federal court to stop the state of Washington from cutting back on their Medicaid-funded in-home care. The families say budget problems cannot be used to justify cutting back on services the children are legally entitled to receive.

According to [the Department of Social and Health Services], the cuts would affect approximately 3,100 disabled children and save the state about $3 million over two years.

According to the lawsuit, … the plaintiffs have disabilities so severe they would be eligible for placement in state institutions if they were not cared for at home. The suit says the children’s parents and guardians already save the state money by assuming responsibility for their care.

… Each child currently receives between 72 and 141 hours of in-home assistance each month.

Peoria Journal Star columnist Terry Bibo writes that the state of Illinois has spent $10 million over the past seven years to remodel and maintain a vacant institution that once housed people with developmental disabilities. And yet, even as the institution sits furnished and empty, the state keeps cutting back on its already meager funding for services for people with disabilities. An excerpt:

Thirty thousand people may lose their services from the Illinois Department of Human Services Division of Developmental Disabilities thanks to budget cuts. That doesn’t count the thousands who are on waiting lists.

Illinois is already 50th among the 50 states when it comes to reimbursing some of these caregivers for services. Now the fees paid to care for each person will be pretty much cut in half — and the state won’t pay its bills for at least three months. The whole system is in meltdown.

… It cost $5.4 million to reconstruct what is now Lincoln Estates. It cost $4.5 million to maintain it. That’s the capital budget, not operating budget. So there is $10 million for empty buildings, but not $10 million for needy people.

(Peoria Journal Star photo)