America leads the way on support for disabled children - Interview Dr Alexa Posny | May 22, 2012

Alexa Posny, Obama's adviser on disabled young people, gives her verdict on the UK's changes to special needs provision

Article by Saba Salman | The Gaurdian - guardian.co.uk,

As a girl, Alexa Posny often played with a boy in her neighbourhood. They had, she remembers, much in common: "We were more alike than different; we had fun together. He liked playing in the sandpit as much as I did."


The only contrast between them, which became apparent when Posny started school in Wisconsin in America's midwest, was that her friend had Down's syndrome. In the 1950s, special needs provision at mainstream schools was unheard of: Posny started school; her playmate never joined her.

More than 50 years later, the memory helps to drive her work as assistant secretary of the Office of Special Education and Rehabilitative Services (OSERS), a role to which she was appointed by President Barack Obama in 2009. She is, in essence, Obama's expert on young disabled people. Her office, under the Department of Education, must ensure that children and young people with disabilities have the same opportunities as their mainstream peers at school and beyond.

Posny's remit has resonance in the UK following the Queen's speech, which outlined an overhaul of special needs provision, including a US-style extension of educational support up to age 25 for young disabled people.

Currently, many young people with autism and other learning disabilities have no appropriate educational support after school. This post-16 black hole was highlighted in Finished at School, a campaign last year by the charity Ambitious About Autism, which runs the specialist TreeHouse school in London and which invited Posny to speak about her work at its recent annual lecture.

The controversial reforms for England and Wales include proposals for new education, health and care plans for special needs children, and the chance for parents, rather than councils, to control their children's special educational needs budgets.

Posny's work is governed by the US's 1990 Individuals with Disabilities Education Act, providing early intervention, special education and related services for more than 6.5 million disabled young people up to the age of 21. So what does she make of the changes?

Post-school plan

She refers to American disability rights legislation, describing the reforms as "headed in the same direction we [America] have worked on for over 40 years ". She compares the UK's personal budget to America's individualised education programme (IEP), "where parents are a major part of decision-making". An IEP determines support at school, with a post-school transition plan for employment or education. While American parents are not given budgetary control, "they are a determining factor in the needs of the child – engaging the parents is absolutely important".

One huge contrast is that, in America, responsibility for young people and learning disability is housed in one department with a wide-ranging, holistic approach and a single, accountable figure of authority: Posny. OSERS covers special education, employment and research through, respectively, the Office of Special Education Programmes, the Rehabilitation Services Administration, and the National Institute on Disability and Rehabilitation Research.

In the UK, disability issues fall across several departments. The Office for Disability Issues "offers support and advice to civil servants across government", but lacks the breadth and profile of Posny's department. Parents seeking diagnosis and support for their children must navigate disparate agencies, from health to education to social services.

The Queen's speech reflected this disjointed approach, offering progress on special needs education but nothing on related comprehensive social care reforms. Public sector funding cuts, meanwhile, are eroding support for society's most vulnerable individuals.

Posny offers no criticism, but says the way the US has allocated responsibility to a single department since the 1980s allows for a "focus on outcomes" such as "people having a good life, and that means they're gainfully employed".

However, she admits that America experiences the same postcode lottery as the UK. Kansas state might only have 10 annual appeals from parents challenging what the state deems "free appropriate education" for learning disabled children; Pennsylvania might have hundreds. I wish we didn't have that in common," she says. "Some parents would like us to provide more services. We must provide free appropriate education – it doesn't mean we have to provide to the maximum extent."

Posny's thoughts on "appropriate education" are interesting given how she dealt with the needs of her son. His mild speech and language difficulties were apparent by the age of three – "He spoke like he had marbles in his mouth." Rejecting his primary school's offer of special education, Posny drew up her own "behavioural intervention plan" including rewards for good behaviour. The decision was rooted in Posny's belief in inclusion: "I figured I could do it on my own. I also wanted him to stay in the general education classroom."

Posny's son was never diagnosed with a condition, although she says it was probably attention deficit hyperactivity disorder. She elaborates: "It's not the label that makes the difference; it's what that the child needs that makes the difference." Now 28, he is an engineer.

Posny also oversees the Rehabilitation Services Administration, which administers grant programmes to support disabled people into work. Compare this with England where, as reported in a recent National Autistic Society (NAS) survey, 35% of adults with autism say they experience bullying or discrimination at work, and 43% say they left or lost a job because of their condition.

Posny's belief in educational integration extends to the world of work: "The key is self-sufficiency; often in sheltered workshops people don't earn enough money to live on their own." She adds: "In a sheltered workshop, you're never exposed to the rest of the world and I'm not sure how fulfilling the jobs are."

She suggests an American pharmacy chain as an example of a retailer that employs disabled people. Isn't there a risk of tokenism, of people being relegated to shelf-stacking and collecting shopping trolleys? She disagrees: "They're not just doing the bagging." The key, she adds, is helping businesses to support the employment of disabled staff, which might be as simple as providing a different kind of chair for someone with a disability.

This focus on self-sufficiency and employment is, she adds, partly a response to the challenge of the ageing population, "because we cannot rely on the parent carers who worry, 'Once I'm gone, what's going to happen?'"

Economic slump

According to 2011 figures, more than 2 million people with disabilities in the US have found work through the vocational rehabilitation programme over the last decade. Is her work threatened by the economic slump and spending cuts? Posny says that, while some discretionary grant programmes have been affected, formula grants (linked to legislation) for children and young people with disabilities are untouched, and there is even some increase in funding. The US government's estimated 2013 budget includes $463m (£293m) for early intervention services, a $20m increase on last year.

Come 2013, however, Posny might be out of a job if Obama is not re-elected. She is candid: "I've had 23 different jobs, I don't think I'll have a problem."

She says she is proud to have witnessed America become a place where children "don't know what it's like to go to school without kids with disabilities". This, she says, again invoking the memory of her childhood friend, "has happened in a generation".

@ http://www.guardian.co.uk/society/2012/may/22/alexa-posny-us-disability-special-needs-adviser?newsfeed=true