Newsletter – June 2007 (page 3)

GOVERNMENTAL NEWS

Disabled Council Member a Rarity

BY MICHAEL KAY

Daily Cal Staff Writer

Tuesday, April 10, 2007 

It’s Tuesday night and the Berkeley City Council is about to begin the evening’s business—but as usual, Councilmember Dona Spring is at home in front of her TV.  Spring is attending by teleconference, as she has done almost exclusively since late 2005, when the obstacles to attending meetings became too onerous for Spring, who has used a wheelchair for the past two decades.  The council member has fought rheumatoid arthritis, an autoimmune disease in which the body’s immune system attacks its own tissues, since she was a 19-year-old junior at UC Berkeley. Difficulties like sorting through last-minute additions to the council docket—her disease has limited the use of her hands—finding a wheelchair-accessible taxi for late-night rides home and pain from hours of sitting upright led the 54-year-old to start staying home after serving on the council for more than 10 years.  “I used to not drink during meetings”—which can stretch to six hours—because of the difficulty with going to the bathroom, Spring said. “All things made it increasingly easier to do it from my home.”

But even teleconferencing has had its glitches. While Spring’s voice normally booms from the council chamber’s speakers, at a February meeting this year, problems with the sound system forced her to follow the proceedings while on the phone with the city clerk.  “It was very frustrating,” she said. “I couldn’t speak directly to the council.”

Spring’s participation in council meetings via teleconference is unique, say local city officials and representatives of organizations for the disabled.  City clerks in Albany, Concord, Hayward, Richmond and Walnut Creek said while teleconferencing is available in their cities—as required by law—it has only been used when officials were traveling.  “I don’t know of any other cities offhand that might be doing that,” said Hayward City Clerk Angelina Reyes. “Another first for Berkeley.”

Clerks could recall only a handful of other current or former council members with known disabilities, a reality that seems to hold true across the political landscape.  In the California legislature, for example, there is currently one member with a hearing impairment.  There has not been a legislator who used a wheelchair since 1998, according to the California State Assembly’s Office of the Chief Clerk.

Yet official data is nearly nonexistent, with many government agencies and disability groups saying they are not aware of any data on politicians with disabilities.  Neal Albritton, deputy director of the State Independent Living Council, guesses the proportion of elected officials with disabilities is equal to the nationwide rate of 20 percent, but that most are hidden.  “A lot of people just don’t bring it up, and a lot of people won’t talk about it or disclose it,” Albritton said.  Most observers attribute the reluctance to the conventional political view of disability as a sign of weakness.  “The problem with politics is that everyone is a macho man or woman,” said Shawn Casey O’Brien, a political activist and radio talk show host who has cerebral palsy.

Spring herself was not inclined to run for public office until she watched her one-time boss and fellow wheelchair user Michael Winter run for a council seat in the mid-1980s.  “I never dreamed that someone in a wheelchair could run for council, could run for public office,” she said.  Running for the first time in 1994, Spring went door to door in her wheelchair and ended up earning a narrow victory over the incumbent. Since then she has held her seat with often enviable ease, winning 72 percent of the vote last year.  “Being physically there at a meeting isn’t as important (to constituents) as being able to get on the phone and talk to me,” she said.

There is no known cure for the rheumatoid arthritis that afflicts Spring, and for those in whom the disease shows up in the first two decades of life, like Spring, there is “increased risk” of other complications, said John Imboden, a professor at UCSF and chief of rheumatology at San Francisco General Hospital.  But the joint and tissue inflammation and pain it causes can be reduced effectively through extra rest, proper diet and new medications, he said.

Spring has a rigorous treatment schedule, but time and her work on the council have still taken a toll. She has had more than 15 surgeries to help fight the effects of the disease and estimates she has a fourth of the energy she had when she was first elected. For now, she is unsure whether she will run for another term in 2008.  “I’m really surprised that I’ve been able to do it with this level of disability,” she said. “I’ve just kept making adaptations.”

Michael Kay covers city government. Contact him at mkay@dailycal.org.

(c) 2005 the Daily Californian  ●  Berkeley, California  ●  dailycalifornian@dailycal.org

Medicaid Funds to Keep Persons Out of Institutions

From: owner-stevegoldada@SteveGoldADA.com

Sent: Tuesday, January 09, 2007 11:15 AM

To: stevegoldada@stevegoldada.com

Subject:   Medicaid Funds to Keep Persons Out of Institutions

Information Bulletin #187    (1/07)

Section 6086 of the Deficit Reduction Act of 2005 has not received much attention.  It offers States a new opportunity to provide a full (or partial) range of community-based services for seniors and people with disabilities.  Beginning now, January, 2007, States can use this new statutory provision without applying for a Medicaid waiver.

Here are some important aspects of Section 6086:

1. It applies to seniors and people with disabilities with incomes up to 150% of the poverty level: $14,700 for a single person and $19,800 for a couple.  These income levels are higher than many States now provide for either MA community-based waiver services or MA state plan services, and could help many seniors with regard to Social Security.
2. Because no waiver application is required, there is no excuse that the process is too complicated.
3. These services can be targeted to persons BEFORE they go into a nursing home. This is important because, nationally, 11.8% of the persons IN nursing homes went into them directly from their own homes and had NOT been receiving any home health services before entering the institution; that’s nearly 155,000 people in nursing homes as of 9/30/06!  Why should anyone be admitted to an institution without at least being offered and provided community-based services?
4. There is no requirement under Section 6086 that persons even meet nursing home level of care criteria.
5. There is no “cost neutrality” requirement that MA waivers have.
6. States can limit the number of persons who will receive these services, so States will be able to monitor and control the financial aspects of offering and providing the services.
7. States can concentrate the Section 6086 services in areas of the State that historically have high concentration of nursing home enrollments.
8. These services can be consumer directed.

Has your State started to offer Section 6086 community-based services?

Will your State offer them?  If not, how can your State continue to complain about MA expenditures, when it will not implement a program that will save MA costs by preventing many of the 11.8% of the persons entering nursing homes?  [Your State’s specific percentage of persons admitted to nursing homes without receiving any home health services can be found at http://www1.cms.hhs.gov/apps/mds/ res3.asp?var=AB2&date=16]

Steve Gold, The Disability Odyssey continues:  Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects.

THOUGHT PROVOKING QUESTION AND ANSWERS

We received this from one of our members, from something which he had read:

“Why on earth would God choose a spokesperson, Moses, who stuttered and could hardly talk?”  The following possible explanations were offered for the divine choice.  Take the time to examine each alternative as you pause during your busy daily routine:

1. The fact that God’s chosen spokesperson is a stutterer is a reminder to us that no one is perfect.
2. That Moses stuttered was proof to everyone that Moses was a human being, not a God.
3. People have to listen more closely to someone who has a speech impediment.
4. If people accepted the Torah, it would be because of its contents and because of their faith; no one could later say that they accepted the Torah because they were swept away by Moses’ oratory or his charisma.
5. Perhaps God chose Moses, not in spite of but because of his handicap, in order to teach us that all human beings are capable of rising above their handicaps and living productive lives despite them.
6. Finally, is it possible that the lesson God intended in choosing Moses was that people with disabilities should not be ignored or considered less human than others?

Which possibility do you think is correct?  Or is there more than one justifiable answer to this query?

This is another thought-provoking article: 

Design for Everyone, Disabled or Not

By LISA CHAMBERLAIN

The New York Times

Published: January 7, 2007

1. LOUIS– Sharon M. Brown cried tears of joy the first time she took a shower without assistance in her new apartment. She had not been able to do anything more by herself than take sponge baths since she was hit by a drunken driver six years ago, further complicating the multiple sclerosis that had been diagnosed years earlier.  For someone who had once hiked 100 miles of the Appalachian Trail, she never thought taking a shower would be such a milestone.

Ms. Brown’s apartment building — which has bathrooms that are accessible to people in wheelchairs, including roll-in showers — is a milestone itself. The building, 6 North, opened in March 2005, and it was the first large-scale residential building in the country where all the units were built using what are called universal design principles.  While building codes set a minimum standard regarding accessibility, universal design is a relatively new concept that seeks to go beyond those codes to make the built environment usable by all people without the need for adaptation. This might include kitchen islands with adjustable-height countertops, front-loading washers and dryers, roll-in showers, and no-step entrances, eliminating the need for ramps.  But the important point, according to universal design advocates, is that it looks and feels like a normal apartment building. Rather than relying on designs that can segregate people according to their disability (impaired vision versus low mobility, for example), the intent of universal design is to create products and environments usable by as many people as possible, including people with no disabilities at all.  Universal design is increasingly available, but few if any other large-scale buildings have used the concept throughout an entire building.

Colleen Starkloff and her husband, Max, who was paralyzed in a diving accident as a young man, wanted to build a national model of universal design.  Through Paraquad, a nonprofit organization they formed in 1970, they had been searching for a developer who would undertake a universal design project.  It was 2003 when Richard D. Baron, the chairman and chief executive of McCormack Baron Salazar, a nationally known builder of mixed-income urban developments, contacted them with what he thought might be a potential site for the project.  “He called me and said:  ‘I think I have a good site.  How many units do you want to be universal design?’  I said:  ‘Richard, I want all of them to be universal design.  That’s the point:  universal.’  And he kind of hesitated and said, ‘O.K., we’ll make it work.’ ”  Mr. Baron hired Andrew Trivers, founding architect of Trivers Associates, to create a mixed-use environment for non-disabled people as well as people with a wide range of disabilities.  The building, in a St. Louis neighborhood called the Central West End, is 95 percent leased, with only 20 units occupied by people with disabilities, which is fine by Ms. Starkloff. “The whole point is integration,” she said.

For Jacqueline Benoit, integration meant more than living next door to people without disabilities, but being able to live with and take care of her son Johnathan again. Ms. Benoit was on her way to work four years ago when a driver struck her car. After six months of intensive care, she was able to breath on her own again. But the accident left her partially paralyzed, and she was sent to nursing homes for three years while her son stayed with relatives.

Ms. Benoit and Johnathan, now 7, moved into a two-bedroom, two-bath apartment in 2005, which includes subtle design features like door handles instead of knobs for easier grasping, a dishwasher and oven that are set into the wall and raised about 18 inches off the ground (a usable height for people standing and sitting), and a stove with control knobs in front of the unit rather than toward the back.  The design features make life more manageable for Ms. Benoit, but the building also offers something for Johnathan.  “He loves the weight room,” Ms. Benoit said.  “We go together and I work on my arm.  I’m happy to be alive and be able to take care of my son.”

Before designing 6 North, Mr. Trivers had never used universal design principles, but now he is a convert.  “This is the future,” he said. “People are living longer and because of health care technology, they aren’t dying from accidents and disabilities the way they used to.  So the question is, how do you design so it doesn’t look like it is for or is only usable by someone with a specialized need?”

Richard C. Duncan, the senior project manager for the Center for Universal Design, said:  “Most people think U.D. is a term that is synonym with accessible design.  But it has this other element that is different:  a social equity component.  That is an invisible part of the product.  “So, for example, a ramp is very difficult to integrate into the design of a building,” he continued.  “We advocate for entrances that are step free, that everyone can use, whether you have a problem with stairs or you’re just carrying packages.”

Mr. Duncan toured 6 North when it opened with other disability advocates and developers, and said the building was serving as a model.  “And that is progress because what we don’t want are one-off projects, but full integration,” he said.  Most “handicapped accessible” buildings, he also pointed out, have two different apartment designs: “normal” units and accessible units for people with disabilities.  “And neither are in fact very user friendly,” he said.  “The point of universal design is integration of design principles into all aspects of the built environment so as not to be obvious for one or another.”

For instance, at 6 North, what looks like interior decoration is actually intentionally contrasting colors to allow people with limited vision to navigate the space.  In the hallways, carpeting in front of apartment entrances is darker to signal the door’s location.  Next to each entryway is a small shelf, which looks like a nice design detail but is also a handy spot for people to put down mail or packages while they open the door. This is, of course, equally convenient for a parent carrying a baby or people with partial paralysis.

Jacquelyn Kish is one such person with partial paralysis, the result of a brain aneurysm and stroke she suffered 18 months ago.  She moved into 6 North recently in order to resume rescuing injured or abandoned animals, which she was forced to give up when she was in a nursing home and lost her house as a result.

“I was told I shouldn’t leave the nursing home until I could walk,” Ms. Kish said while petting one of her rescued cats.  “But I was determined to live on my own again.  I can do that here.”

As for Ms. Brown, living independently is more important than having hiked on the Appalachian Trail.  “Being able to take care of yourself — you don’t appreciate that until you’re told you can no longer do it,” she said.