Disability Access News

March 12, 2008 05:45pm

A DAMNING report into disability accommodation in Victoria shows one in three people who need help from the state doesn't receive it.

The Department of Human Services is unable to currently help about 1,370 people, or 30 per cent of all those requesting support, and demand is growing by up to five per cent per year.

The report into Accommodation for People with a Disability says the department has no strategy to close the gaps in capacity or expertise and "has not accurately quantified future support needs or the associated needs for resources''.

Community Services Minister Lisa Neville could not say how many beds the government had added to the system in the last four years.

The Opposition claims the government has added none.

"This government has fundamentally failed to address a crisis that has been brewing for many, many years,'' Opposition community services spokeswoman Mary Wooldridge said.

Ms Wooldridge said some parents of disabled people were "too scared to die'' because they had no confidence the system would look after their child.

The department provides shared supported accommodation (SSA) for about 4,600 severely disabled people, usually in groups of four or six with 24-hour rostered support.

The report says the department had created 77 new facilities to replace unsuitable facilities in the last four years, but had not increased bed capacity for shared houses.

Ms Neville said not all disabled people wanted to live in shared supported accommodation and the government was focused on individualised solutions.

"We've established the disabilities support register in order to understand the individual needs of people who need accommodation,'' she said.

"We are starting to both improve the current quality of accommodation that's available, but also to make inroads into meeting the needs of people who need accommodation.''

The report by Auditor-General Des Pearson says the department itself identified about 200 of its 914 houses as not meeting building access requirements for disabled people.

"Many SSA houses we visited were easily identifiable from the street as SSA by factors such as ramps, the style of construction and sometimes their state of disrepair,'' the report says.

In the last financial year the department allocated $395 million for SSA, including $156 million through community service organisations, the report says.

The department says in the report that it has started to systematically measure future demand and develop strategies to address it.

There are close to a million Victorians with a disability, the report says.

More than 320,000 of them are considered to have a severe or profound limitation that inhibits their ability to care for themselves, communicate clearly or perform normal cognitive or motor tasks.

Gerard McManus and Natalie Tkaczuk Sikora
March 12, 2008 12:00am

KEVIN Rudd was forced last night to guarantee full bonus payments to carers and seniors in the coming Budget.

The PM's switch followed three days of repeated declarations they would not be worse off -- rhetoric that stopped short of guaranteeing the method of payment.

The sudden change came as carers and pensioners made a plea to Mr Rudd to be true to his word over their annual bonus payments, worth $1600 and $500 respectively.

"Any payment paid this year will be up front," a spokesman for the Prime Minister said.

The emerging controversy dominated Parliament yesterday as the PM issued repeated guarantees that the cash was safe.

But he would only go so far as telling the House carers and pensioners would not be worse off under any changes to payments in the Budget.

"We, the Government . . . are examining ways in which we can place payments to carers and pensioners on to a more secure, long-term footing," he said.

It also emerged yesterday that the bonus payments were not guaranteed by the Coalition had it won government.

The fine print in the Coalition carers policy said continuing payments would be considered "depending on the economic circumstances at the time".

Opposition Leader Brendan Nelson yesterday seized on the Government's failure to elaborate on how the bonuses would be paid in future, launching the first censure motion against Mr Rudd.

Dr Nelson claimed the Government had left 400,000 carers and more than two million elderly in a state of uncertainty over their future.

Carers of disabled children and partners said Mr Rudd must honour his guarantee.

Sally Bailey, who cares for 15-year-old son Daniel, said she never considered the $1600 payment a bonus, and remained angry about the threat to cut it.

"That money has always been put aside for when the big expenses come up, such as a mattress . . . or wheelchair," Ms Bailey, 39, said. "I seriously regret my vote in November."

Daniel -- who is blind, physically disabled, intellectually disabled and has epilepsy -- is just one of her responsibilities. Ms Bailey and her husband, a business services manager, also support their two-year-old toddler and two daughters aged 20 and 18.

Ms Bailey said the carers' bonus had saved the family from falling further behind each year and provided Daniel with much-needed funds for extras such as splints or specialist appointments.

"We don't consider this money a bonus, but a need," Ms Bailey said.

Another carer, Debbie Deery, looks after husband Alan, who suffered a stroke, a heart attack, renal failure and was on dialysis for four years -- all by the age of 44.

Since his kidney transplant three years ago, Mr Deery has suffered blackouts, which have baffled doctors, and has been unable to work.

"My wife and children have been my rock and we've gone through hell together," the Frankston North father of four said.

"God knows how many times I've found her crying, it breaks my heart."

Mornington mum Cathlin Sheridan says the financial stress is constant.

Mrs Sheridan said she had to resign from a promising career to become a full-time carer for Rian, 9, Kayla, 7, and Emily, 5. Early intervention is essential for children with autism spectrum disorder, and little government money is provided, she says.

"It would be disgusting to lose the bonus -- we are struggling so much already to provide the therapy they need," Mrs Sheridan said.

Book chronicles Plano girl's battle with disability that's left her unable to talk

12:00 AM CST on Sunday, March 9, 2008

By ANNETTE NEVINS / Special Contributor to The Dallas Morning News

Like many 8-year-old girls, Schuyler Hudson lives in a world of princesses, castles and ponies. She has her favorite characters, and if you ask, she won't hesitate to beat her chest like King Kong, or imitate a dinosaur.

When Schuyler touches a button on a small machine she carries with her, it roars.

Schuyler, pronounced Sky-ler, doesn't communicate the way most children do. She can make sounds but can't enunciate consonants or use her mouth to form complete words. But that hasn't stopped her from finding her voice.

Schuyler was born with a rare brain malformation known as bilateral perisylvian polymicrogyria, which prevents her from being able to talk.

Her parents, Julie and Rob Rummel-Hudson, endured numerous doctor visits and frustration before finally finding a name for what Mr. Rummel-Hudson refers to as Schuyler's monster.

Mr. Rummel-Hudson, a communications coordinator in the University of Texas at Arlington School of Architecture, chronicled the family's journey in a recently released book. In it, he writes about how the stress of caring for a child with a disability challenged him personally, tested his marriage and ultimately strengthened his family.

"The book is a love letter to my daughter," said Mr. Rummel-Hudson, who has blogged about Schuyler since before she was born. "Someday she may read it and write a rebuttal," he joked.

On a recent weekday, Schuyler sat with other students on the classroom floor at Gulledge Elementary School in Plano reading Flat Stanley, a book about a boy who tries to adjust to being flat after a bulletin board falls on him as he sleeps.

"Flat Stanley can go under doors," said 8-year-old Kayla Stevens-Schmit.

Schuyler's hair is tinted red and styled as a short bob framing her large green eyes and round cheeks. She touched several onscreen keys to form a sentence on the machine that she carries like a purse, her "box of words."

"Peter can fly," a female electronic voice chimed in.

Her classmates took turns guessing what she meant. Schuyler folded her arms across her chest and tucked her head into her chin.

Camryn Evans, 8, came to the rescue, giving Schuyler a pink and purple eraser shaped like a cellphone. Schuyler held it to her ear and began to sign with her hands.

"I know Schuyler's language easy," Camryn said, coaxing her to punch more buttons. "She's talking about Peter Pan."

Search

The search for Schuyler's monster began when she was 18 months old. Schuyler squirmed through numerous evaluations, all sparked by a question from her Yale University pediatrician about why she wasn't talking at her age.

Her condition, a brain malformation that can be seen on MRI scans but is hard to detect, paralyzes the tongue and slows motor skills. It also can cause seizures. The disability, thought to be genetic, is extremely rare – fewer than 1,000 cases have been reported since 1984.

As in his book, Mr. Rummel-Hudson has employed his personal blog to express feelings about the challenges he has faced and how the experience has taught him to be a better father.

"In my dreams, Schuyler talks to me, telling me that things are going to be okay," Mr. Rummel-Hudson wrote in a recent blog entry. "I think she means more than just her own monster battle."

Schuyler's "box of words" is a $7,500 voice machine paid for by donations made through Mr. Rummel-Hudson's Web site, including many from people who knew Schuyler only from his blog, he said.

At school

She's enrolled in a unique program offered through the Plano school district, where 11 children with varying degrees of speech disorders split their time between a regular classroom and one equipped with advanced speech technology.

It's one of only a few programs of its kind in the nation that serve children with disorders that rob speech, including autism and cerebral palsy.

Every child is given a voice machine to help them participate in the program, launched when Schuyler was entering kindergarten. The program is designed to follow the children through high school, school officials said.

Teachers Linda Conerly and Kathy Williams immediately fell in love with Schuyler, snapping pictures of her and a classmate sharing girl talk between their voice machines.

"She is a happy child of joy who has lots of friends, and we all love her," Ms. Conerly said.

Her parents are happy that Schuyler is finally getting a peer group and enthusiastic teachers – a luxury they say she did not have before. She even rides the bus to school.

"This little girl who cannot speak is teaching us about persistence, commitment and compassion," teacher Kathy Tripp said. "That's more than any word can express."

Schuyler touched a button on her small machine, and it roared.

By Fred W. Robinson
frobinson@arcvc.org

Have you ever used the word "retard" in a derogatory way? The phrase, "You're such a retard," can be especially damaging to young children and those who have been diagnosed with a developmental disability.

Before the 1960s, if you had a developmental disability, you would have been placed in a state institution.

Since then, much progress has been made. Now, most state institutions are closed and the developmentally disabled have joined the mainstream as active, participating members of our communities. But while much progress has been made, discrimination and misunderstanding continue to persist. Disrespectful references to people with mental retardation and other disabilities far too often surface in our language, public institutions and entertainment industry.

At The Arc of Ventura County, we have joined other national organizations in a campaign to eliminate the R-word from our vocabulary. It is too often used as a demeaning, hurtful and unnecessary reference to a person who otherwise offers both value and significance to our community.

Last year, our board of directors officially changed our name from the Association for Retarded Citizens, Ventura County Inc. to The Arc of Ventura County Inc. All references to the R-word in our signage, literature and communications have been eliminated.

In November 2006, the nation's oldest group in our field, the American Association on Mental Retardation changed its name to the American Association on Intellectual and Developmental Disabilities. And Special Olympics has advocated that the word "retarded" be dropped from our vernacular. This obsolete word no longer has a meaningful place in our everyday language. It remains appropriate only for reference in history books as a reflection of the last vestige of discrimination against a select group of people.

Instead of the R-word, we recommend reference to people with "intellectual and developmental disabilities." They are a glorious and equal patch in the vast quilt of society.

But there are other issues, too. Healthcare remains substandard for many with developmental disabilities. Although living much longer, basic medical and dental services are often neglected. Additionally, we are seeing dramatic increases in problems related to obesity, diabetes, cardiovascular disease and Alzheimer's. Proposed cuts in Medi-Cal, as outlined in the governor's proposed budget will only exacerbate the problem and ultimately cost us more.

And unemployment for people with developmental disabilities remains at 70 percent — an astonishingly unacceptable level. While community employment programs have successfully demonstrated that people with developmental disabilities can and want to work in our community, more can be done. Many have successfully transitioned off public assistance and now are productive tax-paying members of our community. But there are many more who could benefit from access to these programs.

We ask that you join us at The Arc of Ventura County, along with other agencies and organizations, as we provide appropriate educational and community services for the people we support. They are, after all, people first. Simply put, people with developmental disabilities are entitled to the same benefits of full citizenship as everyone else, including a free and appropriate education, community-based employment, adequate healthcare, clean and affordable housing, and the respect they deserve as contributing members of our community. We needn't unwittingly contribute to the segregation of this community when we can harness opportunities every day.

March is Developmental Disabilities Awareness Month. Please join us as we celebrate the accomplishments of all people with developmental disabilities, not only in March, but every day.

— Fred W. Robinson of Santa Paula is chief executive officer of The Arc of Ventura County. His e-mail address is frobinson@arcvc.org.

SDSU President Stephen L. Weber appointed Mary Shojai to head the 2007-08 SDSU Disability Access and Compliance Committee (DACC), which met for the first time on Feb. 22 and is charged with implementing CSU requirements for disability support and accommodations.

Shojai, director of Student Disability Services in Student Affairs, is particularly well qualified for this role, and her expertise on disability issues is often sought by other CSU and California institutions.

"I believe there is no one at this university more suitable or more dedicated to advocate for our students, faculty, staff and visitors on these issues than Mary," Weber said.

About Shojai

Shojai serves on the campus steering committee and instructional materials committee for the CSU Accessible Technology Initiative, the CSU Directors Council for Services to Students with Disabilities and the Cooperative Programs Advisory Committee for the California Department of Rehabilitation.

She has formerly served on the CSU advisory committee on services to students with disabilities. She is the legislative co-chair for the California Association on Postsecondary Education and Disability, and she recently assisted CSU Los Angeles, CSU Sacramento and University California San Diego in reviewing aspects of their disability services programs.

"It is a privilege to work with this group of campus leaders, all of whom are committed to sustaining and improving accessibility for individuals with disabilities at San Diego State University," Shojai said.

DACC Background

In December 2007, Weber formed the 2007-08 SDSU Disability Access and Compliance Committee, including a majority appointment of new members and the committee's first strategic redesign since its creation in 2005.

The 2007-08 DACC carries on the work of its predecessor in implementing the requirements formalized in Executive Order 926, the California State University Trustees' Policy on Disability Support and Accommodations, issued to the CSU Presidents by Chancellor Charles Reed in December 2004.

The responsibilities of the DACC include the monitoring and evaluation of current disability policy on campus, the development of future programs and services, and the recommendation of priorities and timelines.

The committee is composed of staff, faculty and students selected to broadly represent all university divisions and departments and the disability community. And because the earlier committee's experience demonstrated that narrowly focused assignments would achieve the most effective results, the 2007-08 member appointments were carefully made to specifically assigned working roles, based on areas of individual expertise.