CLÍONA’S JOURNAL

Clíona Ní Chualáin, namhi’s Research and Information Officer, took part in an exchange programme to Buffalo NY and Washington DC during February. Clíona Ní Chualáin, Research & Information Officer namhi,

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Our 10-day visit to the USA which was organised by Atlantic Corridor, and funded by the US State Department. Six participants from the Republic and six from Northern Ireland, representing a diverse range of organisations and disciplines within the disability sector, were selected by interview. We arrived in Buffalo, in the northwest corner of New York State, on the afternoon of Wednesday 5 February—we met the other participants and our ‘leader’.

Thursday 6th Feb: Our first stop was the Parent Network of Western New York’s ‘EPIC Centre, which provides information, training, education and advocacy for parents of children who have intellectual disabilities. It runs training courses on parenting, educational rights, funding, etc.

The morning presentations focused on issues of special education, with an overview of legislation from two attorneys who spoke mainly about the Individuals with Disability Education Act (IDEA), a US federal law first passed in 1975. It is described as a rights structure that empowers families to seek the best education for their child with a disability. The law mandates that every child regardless of disability has a right to an appropriate education. In the US, each state has responsibility for providing education to all children through its school districts.

The IDEA covers children aged 0 to 21. After an assessment, the school district is obliged to allocate a place for each child with a disability in its area. Each school district has committees on special education, with parent members. The committee draws up an Individual Educational Plan (IEP) for each child. Under the law, funding-levels cannot be a reason for not providing a service, but the service must be ‘appropriate education that provides educational benefit’. If a family is dissatisfied with their child’s educational service, they can request due-process hearing; if the decision is favorable, the school district has to pay the costs. A school district has huge economic pressure on it to provide appropriate education as required, as it knows it can be brought to a hearing.

In the afternoon we made three visits. The first was to Allentown Industries, run by Heritage Centres (a large not-for-profit agency providing services to people with developmental disabilities). This was a sub-contracting job shop, employing 300 service users, who were working on packaging books and toys for external businesses.

The next stop was the Stanley Falk School for people aged 5-21 with behavioural difficulties. Many students come from difficult social backgrounds. The school centres on highly structured, small classrooms. There was a feeling of quite a regimented environment. We visited a group home for twelve adults with very high care needs, run by Baker Victory Services who provide a range of services. The home was on a campus of group homes, including some for lone mothers.

Friday 7th Feb: We visited United Cerebral Palsy, which provides a range of services to people with developmental disabilities. These include residential, vocational and employment services and assistive technology. We were given an overview of employment services that show a good success rate in placing people in jobs in the community. The morning’s presentation included a self-advocacy group with an overview of the Self Advocacy Assoc of NY State and AmeriCorps Self Advocacy, which supports people with developmental disabilities to become active members in the community. Self-advocates also do disability awareness in schools and workplaces. We talked with self-advocates who told us they are not happy with the use of the term ‘mental retardation’, which is widely used in the US as the technical term to describe intellectual disability!

The rest of the day included a lunch seminar at the State University of NY: ‘Recognizing Reading and Writing Difficulties in College Students’, and a visit to the Statler Program, a services-industry training course for people with visual impairment. The course has an excellent placement record and students attend from all over the US. We also visited the University of Buffalo Assistive Technology Centre.

Saturday 8th Feb: We attended a performance by ’Moving Miracles’, a recreational dance programme for people with developmental disabilities, most of them with very severe physical and learning disabilities. This was a beautiful presentation of how dance can be used creatively (lying on the floor, body movements etc.), clearly with huge benefits for participants.

Sunday 9th Feb: Skating Association for the Blind and Handicapped (SABAH) proved to be an innovative programme begun by a professional ice skater to give skating opportunities to children with disabilities. We went along to a practice session where hundreds took to the ice, with family members or supporters (including young volunteers from schools), and whatever equipment they needed to help them skate. The group puts on an annual show in front of thousands of spectators—a great joy for children who never dreamed they could ice skate. We rounded off Sunday afternoon in Duffs, famous for its ‘spicy Buffalo wings’!

Monday 10th Feb: Our final day in Buffalo brought us to the Buffalo Psychiatric Centre, to hear a range of speakers on services for individuals with mental illness. We were given a brief history of case management and care-coordination services, particularly the focus on achieving better community-based services and closing institutions. We heard about the NY State legislation, known as ‘Kendra’s law’, which mandates assisted outpatient treatment. We were given a synopsis of legal advocacy services for people who take issue with their treatment. In the afternoon we heard from people diagnosed with mental illness who are recovery-motivated and involved in a peer advocacy programme that provides training, support, coaching and other tools.

Our stay in Buffalo finished with a visit to the Independent Living Center, for an overview of their range of services. On Tuesday we travelled to Washington DC.

Wednesday 12th Feb: Tour of Gallaudet University and Student Academic Centre, a third-level institution specifically designed to accommodate deaf and hard of hearing students. Students attend from all over the US and internationally to study a variety of academic courses. There was a feeling of a segregated, separate community and, while the impressive equipment and technology were state-of-the-art, one wonders why the same could not be incorporated into general third level institutions to accommodate those who are deaf or hard of hearing, in an inclusive environment.

Thursday, 13th Feb: We had a morning presentation from a number of disability organisations based in Washington DC, centring mostly on disability legislation and policy. We heard about MICASSA (the Medicaid Community Attended Services and Support Bill introduced in 2001and reintroduced in 2002/2003, but not yet passed). It is to mandate the right to a community-based service.

We heard from a Protection and Advocacy Agency with an inspectorate role and the power to inspect any agency or institution on the complaint of a service user.

We received an overview from ADA Watch, a coalition of disability organisations that monitor the US disability rights legislation—Americans with Disability (ADA) Act, 1990- They feel some recent cases could undermine the powers of the ADA. Loopholes include the requirement that only taxi companies, not individual taxis, can be sued for not being accessible.

The National Council for the Disabled also monitors disability legislation. The ADA maintains that a person still has a disability, even if they have supports, e.g. a hearing aid. However, the Supreme Court has ruled, for example, that if you take your medication, you no longer have a disability. There are also cases pending that will claim that Congress did not have the right to pass ADA.

We also heard from the American Association of People with Disabilities, the largest national disability group, and the National Mental Health Association. We were given an overview of the Ticket to Work program, an initiative begun last year to provide incentives to assist people who are on disability benefit to seek employment. If a person gets a job and stays in it for a long time, the employer receives a bonus.

Although they only provided a short overview of the US disability movement the presentations were very useful and interesting.

In the afternoon, at the World Bank, we sat in on an International Disabilities Issues Conference, hosted by the US International Council on Disabilities. The focus was on the campaign towards an International Convention on the Human Rights of People with Disabilities, particularly how disability organisations in the US must support the campaign.

Friday 14th Feb: St Valentine’s Day began with presentations from the American Council for the Blind, the Blind Veterans Association, the National Federation for the Blind and the American Foundation for the Blind (where Helen Keller was employed until her death in 1968). Each organisation gave an account of its history and activities. In the afternoon we visited the National Center for the Blind in Baltimore, Maryland.

Saturday 15th Feb: we returned home to Ireland armed with information! As space is limited I have only touched on some of the presentations and visits. If anyone is interested in a particular area, they are very welcome to contact me for more information.

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