LIST OF ARTICLES

Update on CT Disability Advocacy Collaborative Activities
June 2006

KMART Accessibility Lawsuit 4/28/06

Connecticut Disability October 2005 Bulletin

Disabled Face Scarcer Jobs, Data Show

High Court Clashes Over Assisted Suicide

Lowering the Barriers for Disabled Visitors

US Census Bureau Facts About Disability

Service Animals and the ADA

Update on CT Disability Advocacy Collaborative Activities
June 2006

Advocacy Training Workshops!

 The Collaborative has sponsored Advocacy Training workshops in Norwalk and Willimantic over the last six weeks, with another workshop scheduled for the Waterbury area on June 28 (in conjunction with Independence Northwest and the Northwest Activists for Disability Rights). Carol Kana from Greenwich has emerged as a leader of the Norwalk area advocacy network, and Varian Salters, Patty Hope, Dexter Eddy, and Bill Powers are providing leadership in the Mansfield area.

 Between 20-25 individuals attended the workshops in Norwalk and Willimantic, which featured interactive presentations by Betty Gallo, a respected lobbyist who has represented a variety of disability and other non-profit organizations at the state legislature for a number of years. Both workshops offered people with disabilities and families the opportunity to learn skills that will allow them to effectively represent their own interests and needs within the community in which they live and/or at the state level with the state legislature and state agencies.

In addition to developing personal leadership skills, the workshops explained how town governments work; who the key decision-makers within communities are; and how budgets get made. For people interested in state level advocacy, the workshops explained how our state legislature works; how to prepare and give testimony; and the best ways to contact your legislator.

 Larry Robinson. VISTA Volunteer, is working with Pat Tomka from WeCAHR and self-advocate Chad Sinanian to organize a regional advocacy network in the Danbury area. An organizational meeting was held in May which brought together 25 individuals interested in creating a stronger advocacy presence in the greater Danbury area.

 Other organizing efforts continue in the northwest and southeast corners of the state, and in the Hartford area, New Haven area, and Bridgeport area.

Disability Convention 2006

:Exhibitor packets were mailed out to businesses and private non-profit organizations who want to showcase their goods and services at the September 16 Disability Convention, 10 am – 4 pm. There are a variety of options available to service providers and advocacy organizations. If you want to make sure you get a vendor packet, e-mail Jayne Kleinman at jjk1009@hotmail.com or call 203-631-4800.

Greg Smith, nationally known motivational speaker who hosts the “On a Roll” radio show will join us for the day, courtesy of the Self Determination/Family Support Planning Committee. We are attempting to make arrangements to broadcast his show that day from the Connecticut Expo Center, Weston Street, Hartford.

                Special note: watch for the Collaborative’s official web site, to be    up and running by July 1!

Connecticut’s 2006 Legislative Session

A Summary of Outcomes for Mental Health

 Alicia Woodsby, Public Policy Coordinator for NAMI-CT (National Alliance for the Mentally Ill – Connecticut Chapter) has compiled a summary of legislative action during the recently concluded session of the state General Assembly. Here are the two introductory paragraphs from her report:

 “Overall, there were many positive steps for mental health this legislative session. Several new areas of funding and programming were added that address the criminalization and unnecessary incarceration of people with serious mental illnesses. Furthermore, significant progress was made for raising the age in Connecticut Courts to 18 years old.

 In addition, the legislature provided funding and statutory language to continue the Medicare Part D wraparound into the next fiscal year, as well as language to allow for a Medicaid waiver and/or state plan amendment to divert or discharge people with serious mental illnesses who are inappropriately placed in nursing homes.”

 To obtain a copy of the report contact Alicia at 860-882-0236, 800-215-3021, or by e-mail at publicpolicy@namict.org .

 In addition to Alicia’s report, Beth Leslie, Legislative Liaison for the Office of Protection and Advocacy, has updated the P&A web site (www.ct.gov/opapd), listing bills that passed this session that affect people with disabilities. To obtain the text of these and other bills, visit the General Assembly's Internet site at www.cga.ct.gov/ .

 NAMI-CT is looking for Volunteers!

 NAMI-CT (National Alliance for the Mentally Ill – Connecticut Chapter) is looking for parents, consumers and teachers who are willing to be members of teams to present a two-hour in-service workshop to elementary, middle and high school teachers to share the following information:

1. identification of early onset mental illness in children and adolescents
2. skills to help children in the classroom
3. linkages to help connect families to community-based services

 Interested parties are invited to be part of this dynamic new program, called Parents and Teachers as Allies:

        Parents should have a child or adolescent who is currently or was recently    enrolled within the public school system (elementary, middle or high school) and be willing to share the challenges of accessing the proper educational support services for their children.

           Consumers should have experienced early onset mental illness that
challenged their ability to perform effectively in an academic environment and be willing to tell their story about those challenges

        Teachers should be able to articulate the challenges they face in the classroom from a learning and disciplinary perspective.  NAMI-CT would especially appreciate the perspective of teachers who may have a child themselves with mental health needs.  A “train the trainer” is being planned for early July. 

Please call Louise Pyers, Children’s Outreach Coordinator before June 21^st if you are interested and/or would like additional information: 1-800-215-3021.

Candidate Education Trainings

NAMI-CT is also co-sponsoring a series of Candidate Education Trainings this month with the Keep the Promise Coalition, the Reaching Home Campaign, African-Caribbean American Parents of Children with Disabilities (AFCAMP), and FAVOR, Inc. This training is a wonderful opportunity to learn how to educate candidates for public office about mental health issues.

 The regionally based training schedule is as follows:

Region 1: June 20, 2006 from 10 -12 pm at Laurel House-1616 Washington
Blvd., Stamford, CT 06902

Region 2: June 21, 2006 from 1-3 pm at Merritt Hall at CT Valley Hospital-
Silver St., Middletown, CT 06457

Region 3: June 22, 2006 from 1-3 pm at Southeastern Mental Health Authority-401 W. Thames St. Building 301, Norwich, CT 06360 (multi-purpose room)

Region 4: June 27, 2006 from 1-3 pm at Hartford Medical Society- 230
Scarborough St., Hartford, CT 06105

Region 5: June 28, 2006 from 1-3 pm at The Drop-In Center-95 Thomaston Ave.,Waterbury, CT 06702

For more information contact Cathleen Anderson-Baker at: Phone: 877-402-2299 x 5969or by E-mail: keepthepromise@clrp.org .

News from People First

The members of People First who attended a statewide meeting in April developed ideas and phrases for an organizational mission statement.  The ideas and concepts were put into the following language by the People First Board of Directors:

            “People First of CT is a statewide self-advocacy organization that believes that all people should be treated as equals and be respected for what they can do.  We advocate for ourselves and educate people about self-advocacy and People First of CT.  We stand behind closing institutions and encourage people with disabilities to live more independent lives.”

 Local People First Chapters are encouraged to review and make any final comments to their Board representative before the June 22^nd Board meeting.  Members will be asked to adopt the mission at the July 27^th statewide meeting.

 Nine self-advocates from Connecticut attended the 8^th national self advocacy SABE conference on Memorial Day weekend in Atlanta, GA.  Members visited the Dr. Martin Luther King Center and participated in a march to the Capitol and a rally in support of freeing individuals from institutions.  Lois Curtis was honored for the impact she made when she sued the state of Georgia because she wanted to live in the community. Her case ultimately went to the United States Supreme Court and resulted in the Olmstead Decision, which helps people to move from institutions to the community. 

 Chad Sinanian of Danbury was elected Secretary of SABE and he will now serve as an officer and a member of the Executive Committee.  One thousand individuals came to the conference, and from all reports it was the best ever. Quentin Hughes III carried the Connecticut state flag in the opening ceremony.  Chad and Quentin were joined by Carol Grabbe, Varian Salters, Bill Berry, Christine Biesewicz, Jean Bowen, Dale Brown and Leslie Simoes. 

 Future People First meetings:

• June 22 - Board of Directors, The Arc of Southington - 6-8 pm
• July 27 - Statewide meeting, First Church of Christ, Middletown - 7:00 pm
• Sept. 16 – Disability Advocacy Collaborative Convention, Expo Center, Weston Street, Hartford - 10 am – 4 pm
• Oct. 28 - People First of CT state conference, Clarion Inn, Bristol 8:00 am – 4:00 pm – Cost: $25.

 New Parent Support Group Forms

  A new parent support group has formed in the Waterbury area for parents raising children with developmental delays and other special needs:

 WHEN:  First Wednesday of every month

(first meeting was on Wednesday, June 7^th)

TIME:   10:00 a.m. – 12 Noon

PLACE:  Central Park in Waterbury

inside Kid’s Play Gym

(side entrance of Salvation Army)

74 Central Avenue, Waterbury, CT

 Interested parents will get to meet other parents who share similar experiences, receive information about family services and supports, learn more about child development and parenting, and socialize in a relaxed environment. Workshops are being planned on transition services, respite care, and other shared concerns. Light refreshments are provided for parents/caregivers and children.

The support group is being sponsored by the Family Support Network-Northwest Region and the Connecticut Lifespan Respite Coalition. For more information contact: Alice Buttwell - (860) 350-6025 or e-mail: alicemmbb@aol.com , or Joy C. Liebeskind (203) 272-9058 or e-mail:  SJSJL@cox.net .

Hats Off to New Haven

The City of New Haven, first recognized at the local level, has been selected by the National Multiple Sclerosis Society to receive its Employer of the Year Award. On Tuesday, May 30, 2006, Lisa Gerrol, the President of the Greater CT Chapter of the National Multiple Sclerosis Society, presented a plaque to Mayor John DeStefano, Jr. in recognition of the City's efforts to provide accommodations and opportunities for employees diagnosed with MS.

Michelle Duprey, head of the city’s Department of Services for Persons with Disabilities, has worked tirelessly to redress the obstacles people face, having pushed the city to expand its resources for disabled individuals. She and her colleagues are to be congratulated for bringing this honor to the City of New Haven.

DMR to Sponsor Forum

 Public Act 06-92 (HB 5478), An Act Concerning the Department of Mental Retardation, passed the Connecticut State Legislature this session, requiring DMR to solicit input regarding a name change for the Department. Ideas are sought from clients and families receiving services provided by the department, advocates, and other interested parties. DMR is required to submit a report of findings and recommendations, including the cost of any recommended name change, to the Governor, the Office of Policy and Management and the Public Health Committee of the state General Assembly not later than January 1, 2007. There is a new link on the DMR website with information about this issue - www.dmr.state.ct.us/NameChange.htm

There will be opportunity this fall for statewide public input in a public forum format at the Legislative Office Building (LOB) in Hartford. The forum is tentatively scheduled for Thursday, September 7, 2006 in Room 1D at the LOB.

Additional details will follow on the website as they become available.
 

      Opportunity for Families to Participate in Planning
                      The Medical Home Initiative
Dick Edmonds, Bureau Chief of the State Department of Public Health, is inviting families on the Connecticut  Family Support Council to attend the Medical Home Advisory Council (MHAC) meetings. Reimbursement of expenses is available for those families who are not able to obtain reimbursement from an employer to attend.
Molly Cole (mcole@favor-ct.org or 860-563-3232) and Richard Antonelli (860-545-9333) are co-chairing the MHAC should you want to further discuss the purpose and mission of this Council. To get on the email list for announcements of future meetings, send your contact information to Dorothy Pacyna, Department of Public Health, at  Dorothy.Pacyna@po.state.ct.us .

Latinos with Disabilities: Breaking Barriers

A bilingual conference entitled “Breaking Barriers through Multicultural Awareness” will be held Thursday, June 22, 2006 from 8:00 am – 3:30 pm in the Student Center at Central Connecticut State University in New Britain. The conference is designed for individuals with disabilities, parents and family members, advocates, human service workers, teachers, students, and employers. Workshop topics include special education, communication across cultures, self-advocacy, family dynamics, and social security benefits, with an emphasis on promoting cultural awareness among people with disabilities and those who serve them.

 The keynote speaker will be Kathleen Martinez, Executive Director of the World Institute on Disability in California and an internationally known disability rights leader.

 For more information, or to register, contact Padres Abriendo Puertas at 860-297-4378.

 CAHS Sponsors Food Stamp Workshop

The Connecticut Association of Human Services (CAHS) invites interested persons to a series of workshops on the federal Food Stamp Program during the month of June. The workshops are being co-sponsored by the United States Department of Agriculture (USDA).  Attendees will be provided with updated information about: program eligibility rules, income guidelines, where and how to access the programs, and much more.  Regional USDA officials and local DSS officials will be present.  The Food Stamp workshop will be immediately followed by a special Kids Count report release.

This free workshop will be offered on the following dates and times at the locations listed:

·        Tuesday, June 27, from 8:30 a.m. - 12:30 p.m. at Gateway Community College-60 Sargent Drive, in New Haven.

·        Wednesday, June 28, from 8:30 a.m. – 12:30 p.m. at the Timexpo Museum in Waterbury-175 Union Street

·        Thursday, June 29, from 8:30 a.m. - 1:00 p.m. at the City Hall Annex-999 Broad St., in Bridgeport.  (Note: The Bridgeport event will be co-hosted by the Bridgeport Social Services Department.)

For more information contact Tracy Helin, CAHS, 110 Bartholomew Avenue, Suite 4030, Hartford, CT 06106, E-mail thelin@cahs.org or call (860) 951-2212 ext. 236.

"Come and See" Leadership Training

Interested in learning how to increase the numbers of parents and potential leaders involved in your community? Want to learn how to become a more effective leader in bringing about effective change for families and children in Connecticut?

 The Discovery Community Initiative is offering a training opportunity to help parents, providers and community leaders within Discovery Communities understand the power of the one-on-one conversation tool to build community and increase capacity for parent involvement and action. Participants will receive hands-on training in how to conduct one-on-one interviews, as well as learning about the tools and strategies needed to engage others from your community more fully into your organizing initiatives. To find out if you live in a Discovery Community go to: www.democracyinaction.org/dia/track.jsp?key=127922965&url_num=5&url=
http://www.discovery.wcgmf.org/communities.html .
This training, which will be a dynamic and interactive learning experience, is being held on Friday, June 16th from 9:00am-3:00pm at the Unitarian Society of New Haven, 700 Hartford Turnpike in Hamden.

Interested? Contact Ann Pratt, Director of Connecticut Parent Power, with questions: (860) 209-1234, or prattworks@earthlink.net . Stipends are available to help with childcare and transportation expenses. 

                                        News from the U.K.

Justice for All sends along an article from the Daily Mail in the United Kingdom re: the ethical storm over abortions that has been renewed as it appears that termination of life is being carried out for minor, treatable birth defects. Here are some excerpts:

"Late terminations have been performed in recent years because the babies had club feet, official figures show. Babies are being aborted with only minor defects. Other babies were destroyed because they had webbed fingers or extra digits. Such defects can often be corrected with a simple operation or physiotherapy.

The revelation sparked fears that abortion is increasingly being used to satisfy couples' desire for the 'perfect' baby. Campaigners warned we are turning into a society that can no longer tolerate imperfection. Ethical groups fear parents are opting for abortions because they are not told of the support and help available if they continued with the pregnancy.

Figures from the Office for National Statistics show that between 1996 and 2004, 20 babies were aborted after 20 weeks because they had a club foot. It is one of the most common birth defects in Britain, affecting one in 1,000 babies each year. That means around 600 to 700 babies are born annually in the UK with the problem, which causes the feet to point downwards and in severe cases can cause a limp.

However it can be corrected without surgery using splints, plaster casts and boots. Naomi Davis, a leading Pediatrician at Manchester Children's Hospital who specialists[sic] in correcting club feet, said: 'I think it is reasonable to be totally shocked that abortion is being offered for this. It is entirely treatable. I can only think it is lack of information.'

Figures also show that four babies were aborted since 1996 because they were found to have webbed fingers or extra digits, which can be sorted out with simply surgery. In 2004 it emerged a baby was aborted at 28 weeks after scans showed it had a cleft palate. Curate Joanna Jepson tried to ensure criminal charges were brought against the two doctors involved but the authorities last year decided against prosecution. She however vowed to continue in her fight to make terminations illegal after 24 weeks and to ensure cleft palates were not included within the term 'serious handicap' and used to justify late abortions.

Ms. Jepson reacted angrily to news of the club foot abortions. 'The law was not designed for this,' she said. 'Actions like these are fostering a disposable attitude to human life and I'm extremely concerned it is going on. I am appalled that the medical profession is allowing or even suggesting abortions for these conditions.'

Sue Banton, founder of the group Steps for parents of children with foot disorders, said last year one couple decided to terminate a pregnancy at 25 weeks after discovering their baby would have a section of foot missing. 'We gave them other families to talk to, but they just didn’t want to know,' she said. 'It is terrible. 'I know lots of perfectly nice people with this condition and you just can't imagine them not being here.'

Pippa Spriggs from Cambridge, whose son Isaac is celebrating his second birthday in July, was dismayed when a scan showed her baby had a club foot. 'Abortion certainly was not openly advised but it was made clear to me it was available,' she said.

Julia Millington, of the Alive and Kicking Campaign, said: 'It is all about our perceptions of perfection. Increasingly things are moving along the lines where nothing is good enough. It seems we can no longer tolerate any imperfection. Babies are at the mercy of ultrasound scans and what they may disclose.' "

NCD Releases Report on Airline Kiosk Systems

In late May the National Council on Disability (NCD) released a Position Paper on Access to Airline Self-Service Kiosk Systems, calling on the U.S. Department of Transportation (DOT) to adopt an updated Air Carrier Access Act (ACAA) standard for accessible design applicable to these kiosk systems. The report also asks DOT to initiate settlement negotiations with covered air carriers and airports to bring their kiosk systems into full compliance.
 
According to NCD chairperson Lex Frieden, "U.S. air carriers and airports have obligations under federal accessibility laws and regulations to provide cross-disability access to their kiosk systems. Those carriers and airports operating kiosk systems not in conformity with the Americans with Disabilities Act’s standard for accessible design, which is also ACAA’s standard, are out of compliance."
 
"Advances in information technology (IT) have enabled the airline industry to improve the quality and efficiency of its services delivery while reducing operating costs. But the airlines would leave travelers with disabilities out of the IT loop, failing to offer them the same benefits and convenience of service available to other travelers. The airlines" resistance to providing customer services through fully accessible kiosks and Web sites disregards the capacity of accessible IT to empower people with disabilities to do for themselves," Frieden concluded.
  
Although no airline-kiosk vendor serving the U.S. market has included accessibility among its product features, vendors confirm that they foresee no significant technical obstacles to development and deployment of fully accessible kiosk systems using existing access technology. A leading authority on accessibility technology estimates that the costs of access hardware and software modifications for a fully accessible system would not exceed one to two percent of the overall cost. However, the airline industry has yet to acknowledge the need for such a product.
 
For more information, contact Mark Quigley at 202-272-2004 or 202-272-2074 TTY. The full report can be found at www.ncd.gov/newsroom/publications/2006/kiosk.htm .
 

                                                                                Go To Top

Service Animals and the ADA

For people with disabilities, a service animal can provide valuable assistance. The Americans with Disabilities Act (ADA) requires businesses and public place to admit people with disabilities who have service animals.
A service animal is not required to wear any special gear or identification. The handler is also not required to carry any certification papers showing that the animal has been trained as a service animal. A handler may be asked if the animal is a service animal or what tasks the animal has been trained to do.
Because service animals are not pets, local laws that restrict pets from restaurants, housing and theaters, for example, are not applicable to service animals.
For more information, visit the Delta Society at www.deltasociety.org.

From Granite State Independent Living Center

                                                                                    TOP

Go to Top

Enhancing the effectiveness of disability activism by organizing and empowering individuals, families, groups and organizations

Disability Rights is a Civil Rights Issue

October, 2005

Disability Advocacy Collaborative Update

[PLEASE NOTE: SOME LINKS MISDIRECT.] 

Organizing continues across the state as the Collaborative seeks to create regional networks 
of disability activists. Networks are in various stages of development in the Mansfield area,
Groton/New London area, Hartford area, Waterbury area, Danbury area, Bridgeport/Stratford 
area, and the New Haven/Hamden area. Anyone interested in getting involved in a network near 
where you live contact Jayne Kleinman or Stan Kosloski at the addresses listed at the top of 
this newsletter.

The Collaborative Statewide Steering Committee has also organized five committees to begin 
planning for the Disability Convention, set for September 16, 2006 at the Hartford Expo Center. 
These committees are the Candidates Forum Committee, the Sponsors and Vendors Committee, 
the Agencies and Organizations Committee, the “Fun” Committee (to make sure participants 
enjoy themselves, and to provide activities for children), and the Public Relations and Fund 
Raising Committee.

New Jersey has run Disability Conventions for several years and two convention organizers

will visit us on Saturday, October 29 to share their experience. The event will be held at 

the Center for Disability Rights in West Haven (764A Campbell Avenue) from 1-3 pm.

Members of the State Steering Committee and the regional networks are invited to attend.
Watch for more news in the November Bulletin.

Building Code Challenged by Homebuilders

Every five years, the Connecticut Building Code is revised to incorporate changes in technology,

construction methods, standards, law and policy.  The latest revision has made its way through 
a lengthy process of public comment, review and deliberation by the Department of Public 
Safety’s Codes and Standards Committee.  The last phase of the approval process was scheduled 
to occur on September 27, 2005 when the legislature’s Regulations Review Committee took 
final action. While far from perfect, the proposed Code generally maintains good accessibility 

standards and merited adoption. Enter the homebuilders and their lobbyists.

While hardly a mandate for universal accessibility, the proposed code reflects a reasonable attempt to balance various competing factors, and to protect the public interest in safe, accessible and economically feasible construction.  However, well financed development interests (i.e., homebuilders) are opposing its requirements for accessible housing.  Citing much lower requirements for accessible multi-family housing in other states (2% - 5%), and the fact that other states do not require accessibility in townhouse construction, the home builders are urging legislators to strip those requirements from the proposed code before it is finalized. In response to the homebuilders’ lobbying efforts, the Regulations Review Committee rejected the Code as it was presented to them and asked the Department of Public Safety to consider revisions to the multi-family housing sections. The Committee also suggested that the homebuilders meet with access advocates to try to iron out differences.
The Collaborative will keep readers informed as the dialogue continues.

  Medicare Part D -The New Prescription Drug Bill

A new law known as the Medicare Modernization Act, or the MMA, will take effect January 2006, and many seniors and individuals with disabilities are concerned, and rightly so. As Medicare Part D takes effect, low-income persons will have their existing Medicaid drug coverage replaced completely by Medicare Part D private plans, with a new cost structure and new drug formularies. (drugs will no longer be available if they are not on your particular Part D drug plan's list).

The stated purpose of the Medicare drug benefit is to assist the senior population and individuals with disabilities in paying for their medications, not make paying for them more difficult. But read on…. The need for action is now!

Unless the state legislature acts before January by adopting a full "wraparound" approach, the 
combination of unaffordable co-payments and the use of "closed formularies" will present severe 
drug access problems for low-income Medicare recipients. On Friday, October 7, 2005, United 
Seniors in Action (USA) called on the state General Assembly to fix the problem 
when it goes into special session on Tuesday (10/11/05). Governor Rell has called the 
legislature into session that day to deal with campaign finance reform, but the agenda does 
not have to be limited to that topic.

There will also be an informational hearing on coverage gaps for Medicaid participants 
who, because they were dually eligible for Medicare, are being forced onto Medicare Part D, 
and stand to lose coverage.  The hearing will be held on October 19 at 1:00 pm in Room 1C 
at the Legislative Office Building in Hartford before the Select Committee on Aging, 
Human Services & Public Health.

And lastly, Kate McEvoy of the Connecticut Association of Area Agencies on Aging 
(CAAAA) is looking for stories from people currently on Medicaid or ConnPACE who 
will be negatively affected when the new Medicare Part D drug benefit goes into 
effect. It is entirely possible that drug coverage for certain "dual eligibles" (Medicaid recipients who
also are on Medicare) will end, while drug coverage under ConnPACE will become far more limited.  

Specifically, CAAA is asking for stories that identify situations in which:

a) dually-eligible individuals will be unable or will have great difficulty
 making the required co-payments ($1 to $5 per prescription);

b) dually eligible and/or ConnPACE participants require a certain drug and
 will be negatively affected because such a drug is either unavailable 
on a formulary or is later removed from the formulary of the plan that they 
have selected or requires a co-pay beyond their financial means;

c) ConnPACE participants will be unable to pay, or will have great difficulty 
in the gap period paying, the differential between the cost of their prescribed drug 
and a lower cost drug in the same therapeutic class, as will be required of them 
starting January 1st; or

d) individuals have in the past had to appeal a drug denial and can describe the 
difficulty of that process.

CAAA is also seeking individuals who would be willing to be profiled in their materials, are willing 
to speak to the press, and/or to be photographed (individuals should be made aware that they may
 be asked to use their names, town of residence, photo and if applicable to describe them as 
"low-income", and that AARP will be the organization contacting them).

Interested parties should forward a brief summary and contact information (name, town of 
residence, and telephone number) for any willing individuals to Kate at the following address: 

Kate McEvoy, J.D. - Assistant Director 

Agency on Aging of South Central Connecticut, Inc.

One Long Wharf Drive - New Haven, CT  06511 

Telephone: (203) 785-8533.

To obtain more detailed information about the new program go to: www.nsclc.org/issues_health_medicareD_con.htm .

 Beginning in mid-October, Medicare’s Web site, www.medicare.gov, and its 24-hour toll-free number, 1-800-MEDICARE (1-800 633-4227), will have specific information about the new program available  To get a plan that works beneficiaries should make a note of any current drug coverage, their prescription drugs and their preferences about pharmacies or additional coverage. A map of the prescription drug plan and Medicare Advantage plan regions can be found at www.cms.hhs.gov/medicarereform/mmaregions/. For more information, go to www.cms.hhs.gov/map/map.asp .

 Congratulations to FAVOR, Inc.!

FAVOR, Inc., whose primary purpose is to foster the strengthening and expansion of the children’s mental health family movement in Connecticut, was notified last week that they are the recipient of a $165,000 grant from the U.S. Department of Health and Human Services to develop a Family to Family Information and Education Center. The award is a part of the federal government’s initiative to implement Systems Change strategies throughout the United States. The grant will allow FAVOR to provide information, education, and training opportunities for families with “special health care needs”. For more information contact Molly Cole at FAVOR, Inc.-2138 Silas Deane Highway - Rocky Hill, CT 06067. Phone: (860) 563-3232. Email: favorct@aol.com.

 Discouraging News

Despite the ADA and the concerted campaign of disability leaders, the number of people with disabilities who have jobs continues to drop.  A report to be released this week by Cornell University's Employment & Disability Institute shows that the employment rate has fallen from 40.8% in 2001 to 38.3% in 2004.

Among the reasons for the falling numbers are the outsourcing of jobs overseas and the increase in low-paying service jobs that don't offer adequate health-care coverage.

Sadly, the statistics reflect a long-term trend.  Notes Andy Imparato, President and CEO of the American Association of People with Disabilities, "The employment rate for people with disabilities hasn't improved in the last twenty years, even when times were good." 
You can read more in a Wall Street Journal article of October 5, 2005. [SEE ARTICLE BELOW.]

 Disability Rights Rally

A disability rights rally was held on October 5 in Washington, D.C. prior to oral argument before the Supreme Court on two major disability cases: Gonzales v. Oregon (assisted suicide) and Schaffer v. Weast (burden of proof in education cases).

Activists from the group Not Dead Yet showed their opposition to the physician assisted suicide law. As reported in the New York Times, Carrie Ann Lucas, an advocate for people with disabilities who lives in Denver, said she came to Washington because she believed that the medical system would abuse such laws. "People with disabilities are devalued by doctors, by nurses, by hospitals and by H.M.O.'s," she said. In a narrow sense the debate was over states' rights, Ms. Lucas said. But because the civil rights of people with disabilities were at stake, she went on, that should tip the balance against the Oregon measure.

Schaffer v. Weast, the Court heard oral arguments on the burden of proof in special education cases. In a dispute between parents and school officials, should schools be required to prove that the plans they propose are adequate and appropriate, or should the burden of proof rest with the families?

For more information on Gonzales v. State of Oregon go to www.notdeadyet.org/docs/ gonzalesbkgd091405.html ,and for information on Schaffer v. Weast go to www.wrightslaw.com/news/05/schaffer.oral.argument.htm.

 Current Threats to Ventilator Users in Cost-Cutting Proposals from
Medicaid and Other Medical Insurance 

State governments in the United States are currently under intense pressure to limit or reduce Medicaid expenditures. The Post-Polio Organization is asking that we make our voices heard or there may be serious consequences for ventilator users -- new restrictions that limit their access to community-based care and independent living arrangements. The International Ventilator Users Network is urgently concerned about these developments, and seeks support for a resolution developed by its Consumer Advisory Committee. The resolution regarding “Current Threats to Ventilator Users in Cost-Cutting Proposals From Medicaid and Other Medical Insurance,” is online www.post-polio.org/ivun/index.html .

 Kathleen Martinez Appointed Executive Director of
World Institute on Disability

Kathy Martinez has been named Executive Director of the World Institute on Disability. "I am truly honored to be selected to direct this organization of innovators and mavericks who, since WID's beginnings have been unafraid to create and test new ways to reduce the obstacles facing people with disabilities." Blind since birth, Martinez, 47, is an internationally recognized disability rights leader specializing in employment, asset building, independent living, international development, and diversity and gender issues. Since 2000 Kathy has supervised WID's technical assistance, international employment, poverty reduction and training projects. She is one of 15 Presidentially appointed members of the National Council on Disability, an independent federal agency, and has just been appointed one of eight public members on the State Department's Committee on Disability and Foreign Policy.  
Based in Oakland, California WID is an influential public policy and research center, founded in 1982 by international disability rights and independent living leaders. More information about WID can be found on their web site: www.wid.org .

 ADAPT Gets Commitment from HUD Secretary Jackson
on Voucher Implementation 

Just to be sure HUD Secretary Alphonso Jackson got that ADAPT wants HUD vouchers for people transitioning out of nursing homes and institutions into community living, ADAPT delivered the message simultaneously at Jackson's home in Alexandria, Virginia, and HUD headquarters in Washington, D.C. On September 20^th the strategy paid off when Secretary Jackson came down to HUD plaza to personally meet with protestors, and commit to work with ADAPT on voucher implementation.

 "We are pleased that Sec. Jackson did what no HUD Secretary before him has done, namely, come to us in the street, outside the HUD fortress, and pledge to work together to improve the lives of people with disabilities." According to Shona Eakin, Pennsylvania ADAPT Organizer. "We have made real progress in recent years getting people out of nursing homes using our own ingenuity, perseverance, and the Medicaid System Change Grants. Lack of accessible, affordable, integrated housing remains the greatest barrier to community living for people who are currently warehoused in nursing homes and other institutions.”

 The dearth of housing surpasses even the universal lack of adequate community based services and supports. According to statistics compiled by the Centers for Medicare and Medicaid, more than 300,000 of the million and a half people in the nation's nursing homes want to move back into the community. That will only be possible with enough accessible, affordable, integrated housing, and community-based services and supports. For more information contact Bob Kafka 512-431-4085 or Marsha Katz 406-544-9504, or go to the ADAPT website: www.adapt.org/ .

 Canadian Association of Broadcasters (CAB) to Develop Broadcaster Tool Kit on Persons with Disabilities in TV

The Canadian Association of Broadcasters (CAB) submitted to the Canadian Radio-Television and Telecommunications Commission (CRTC) its research report titled “The Presence, Portrayal and Participation of Persons with Disabilities in Television Programming”. The Report provides extensive detail on the issues and barriers facing persons with disabilities, in society and in television programming alike. It further provides a series of recommendations for the development of a broadcaster tool kit to help promote greater inclusion of persons with disabilities within the broadcasting industry, and to address issues of presence and portrayal on-screen. The 100-page report and research study is the culmination of the work set out in the CAB Action Plan submitted to the CRTC in August 2004. The full report and research study can be found at: www.cab-acr.ca/english/social/diversity/disabilities.shtm .

Right to Travel with a Service Animal in the Airline Cabin
Threatened by DOT Proposed Rule

The United States Department of Transportation has issued proposed rules permitting airlines to charge disabled passengers traveling with large guide, hearing or service dogs for an extra seat. The International Association of Assistance Dog Partners (IAADP) is quite upset by this turn of events, and has suggested the following alternative language be substituted: "You may offer the passenger sitting in a seat adjacent to the disabled passenger traveling with a large service animal a seat in the same class of service in another part of the cabin.  If no seats are available in that class of service, you may ask for a volunteer willing to occupy the seat next to the disabled passenger requiring sharing of leg room. If no volunteer is forthcoming and seats are available in another class of service in another part of the cabin, you may ask the adjacent passenger or the disabled passenger to occupy a seat in that other class of service." These suggestions would place no financial burden on the airlines nor would it inconvenience other passengers according to the IAADP. The organization feels that political pressure may be the only viable approach to change the rules.

 New PAS Users and Nursing Home Resources
Available on the Center for PAS Website

The Center for Personal Assistance Services website has a newly revised home page designed for PAS users. The site provides information and resources to assist in living independently, as well as provide a place for PAS users to learn from experts and each other. For more information, go to http://pascenter.org/pas_users/index.php .

The website also has a new Institutional Services page that provides links and a library on nursing home information. The Center feels that in order to better understand home and community services, it is useful to compare these services to institutional care. The PAS Center has therefore developed this section to provide detailed information on nursing homes and other institutional services. The information includes statistics on the supply, residents, and quality of services by states and across the nation. For specific questions about institutional care, please contact the Center. For more information, go to www.pascenter.org/nursing_homes/index.php .

Please relay this Bulletin to your membership including those who do not have email access. Suggest your membership go to the library and go onto www.kleinmanconsulting.com to view or print a copy. If you would like to see previous issues of the Bulletin, read about the background of the Collaborative or if you would like to be added to the mailing list, you may also go to www.KleinmanConsulting.com. 

How can you find your federal Representatives and Senators? Go to  www.congress.org and find the box under the heading “Write Elected Officials.” Type in your Zip code and press the “Enter” key. Then, when the names of your elected officials come on the screen, click on the word “Info” under the name of the elected official you want to contact. The telephone number will be listed on the page that comes up next. You may also call the U.S. Capitol Switchboard at 1-888-818-6641.
The best way to contact your Member of Congress is via phone (or ideally in person). The best time to call either in CT or in Washington, D.C. is early in the morning.

Go toTop

October 5, 2005
Wall Street Journal

Disabled Face Scarcer Jobs, Data Show

By Kris Maher

          Outsourcing and the growth of low- paying service positions are likely to make it tougher for disabled workers in the U.S. to find jobs, despite advances in technology and more favorable attitudes among employers, experts say.

          According to a report to be released today by Cornell University, based on Census Bureau data, the employment rate for Americans age 21 to 64 with sensory, physical, mental, or self-care disabilities fell to 38.3% in 2004, from 40.8% in 2001.

        Disability researchers say the data offer a clearer picture of the situation than previous statistics from the Labor Department’s Current Population Survey, because the new data rely on a larger sample size and a more precise definition of disability. “A lot of people have been hammering the CPS for a long time for not being very accurate,” says Andrew Houtenville, senior research associate at Cornell’s Employment and Disability Institute. “This really says things are indeed getting worse” for disabled workers.

        Doug Kruse, an economist at Rutgers University, says disability benefits keep some disabled workers from accepting jobs, because they can lose several hundred dollars a month in Social Security Disability Income after earning more than $830 a month for nine months. “That’s a whale of a disincentive to work,” says Mr. Kruse.

        Others say that outsourcing abroad has cut jobs often done by the disabled, such as call-center positions. “Unfortunately [moving jobs overseas] means that blind and visually impaired people are not doing those jobs” in the U.S., says Karen Wolffe, director of the professional development department at the American Foundation for the Blind.

        In January, Doug Schalk lost his position as a customer representative at Vanguard Car Rental USA Inc.’s Alamo Rent A Car, when the company transferred his call center’s work to India and a different location in the U.S. Mr. Schalk, who is blind, was able to land a job with Willow CSN Inc., a Miramar, Fla., company that manages call centers through a network of about 2,000 home-based workers. But he says that six of 10 blind former coworkers remain unemployed

        The employment figures highlighted by the Cornell study are consistent with long-term job trends for disabled workers. “The employment rate for people with disabilities hasn’t improved in the last twenty years, even when times were good,” said Andrew Imparato, president and chief executive of the American Association of People with Disabilities, an organization with 115,000 members.

        Mr. Imparato and other disability advocates blame a variety of factors, including inadequate job training and negative attitudes among some hiring managers. But they also point to more recent employment trends, such as the abundance of low-paying service-sector jobs that often don’t provide adequate health benefits to meet disabled workers’ needs.

Go toTop

 ROSANGELA BERMAN-BIELER brings a certain sensitivity to her work as an expert on disability issues in the Caribbean for the World Bank. Ms. Berman-Bieler, who lives in Washington, is also a quadriplegic who relies on a wheelchair. Just getting off a plane in a place like St. Lucia, she said, presents problems because there are no Jetways.

"I had to be carried down the stairs by the personnel at the airport," she said about her arrival at the Hewanorra International Airport in April. Being carried by airport personnel who are normally not trained for disabilities, she said, means "putting in jeopardy our lives and their backs."

 Her experience was not unusual, according to a study of disabled travelers released last month by the Open Doors Organization; (773) 388-8839, www.opendoorsnfp.org, a nonprofit group based in Chicago, with the Travel Industry Association of America. More than 21 million disabled people have traveled the last two years, according to the study. Of the 1,373 adults who were surveyed online and by telephone, 82 percent had problems at airports and 60 percent said they had problems with accommodations.

On July 26, 1990, President George H.W. Bush signed into law the Americans with Disabilities Act, guaranteeing equal opportunity for people with disabilities in public accommodations, commercial facilities, employment, transportation, state and local government services and telecommunications.

37.5 million -- Number of people age 5 and over in the civilian noninstitutionalized population with at least one disability, representing 14 percent. These individuals fit at least one of the following descriptions: they are 5 years old or older and have a sensory, physical, mental or self-care disability; they are 16 years old or older and have difficulty going outside the home; or they are 16 to 64 years old and have an employment disability.

8 percent of boys and 4 percent of girls ages 5 to 15 have disabilities.

10.8 million -- The number of people age 5 or older with a sensory disability involving sight or hearing. This group accounts for 4.1 percent of the civilian noninstitutionalized population age 5 or older.

$33,109 -- According to the March 2001 supplement to the Current Population Survey, these are the mean earnings in 2000 of year-round, full-time workers 16 to 64 with work disabilities. By comparison, those without work disabilities earned an average of $43,269.

2.5 million -- Number of veterans who received compensation for service-related disabilities as of 2003. Of these vets, 414,000 served in World War II; 164,000 in Korea; 848,000 in Vietnam; and 476,000 in the Persian Gulf (the data cover service from Aug. 2, 1990 to Sept. 30, 2003). See Table 515 at U.S. Census Bureau - Statistical Abstract of the United States (www.census.gov/prod/www/statistical-abstract-04.html).

Source: Access New England, Summer 2005: Vol. 9, No. 3:4-5

Go toTop