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The Independent – Autumn 2007

Table of contents:

Autumn Independent

Conversations about disability rights and services often lead to conversations about the connection between rights and services. I am sure that it also happens with senior advocacy issues. When are we fighting for services and when are we fighting for the resources that make equal opportunity possible? Perhaps the truth is that rights and services are two sides of the same social promise, both part of a necessary human commitment to be there for one another.

During the recent Road to Freedom gatherings (see page 4) Jean Mankowsky described growing up with a disability and finding her way from seeing herself as an unwilling recipient of charity to experiencing herself as a person who could be (and was) a catalyst for change. She described her involvement in the early organizing for a comprehensive national disability rights law. The law was created and passed and is now the Americans with Disabilities Act. Annie Whitehouse, of Green Mountain Self Advocates, also spoke of her search for a meaningful job and of finding the faith in herself that makes her an outspoken advocate. She told other Vermonters to speak up for work, rights and for a better world.

In this issue, Dolly Fleming, Director of COVE, shares a piece she wrote a few months ago. In it she describes the power and the gift of our shared need for one another and for the human connections and meaning of community. It seems that both rights and caring are essential to true community and social respect.

We hope that the resources and voices included in this issue bring both rights and community into your home. Thank you for being with us.

Deborah Lisi-Baker, Editor

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Letters to the Editor

ADA Celebration A Wonderful And Enjoyable Day We met in Montpelier, Vt., and walked from the VCIL building to the lawn of the state Capitol. Some of us walked, some were in wheelchairs, electric carts or on crutches, but all were for the same cause — independence.

ADA has helped in many ways, but I think there is much more that can be done. We are not disabled, but each person there had a handicap with a challenge. I have Polio or PPS, and am legally blind. I face each day with a challenge just to get up, put braces on and walk. So many people there, each with a different disability but with one thought. They want to be as independent as much as possible. What we need most now is for someone to listen to what we want and can do, not put us all in one category — each of us are individual and each one in their own way can help. There were many different disabilities there but we all came there as one group. My daughter Missy Boothroyd is a Peer Advocate Counselor for VCIL in Brattleboro, Vt. She is Deaf and she is a fighter, challenged more because she is Deaf. I am very proud of her.

Derina M. Meunier
Amherst, Mass.

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Help For Chemically Sensitive People As a chemically sensitive person (pesticides sprayed into my 1981 California apartment) plus other health problems, I was glad to read about Hector Racine and Jack Rogers’ ability to act as peer counselors.

I have been in and out of Vermont my entire life beginning at 7 months of age when Mother ran a camp for out-of-state kids in conjunction with a private school on the north shore of Chicago. That was 1926. My first 25 summers we drove that almost-1,000-mile trip to Vermont in June, returning to Illinois right after Labor Day.

Marriage took me to Oregon and California until my forester husband was offered a job with Vermont’s forestry department in Rutland. We returned for our first winters in Vermont in 1957 where we lived mostly in Mendon until another job took us to New York state.

By 1968, I’d returned to the house in Gaysville, working as Killington’s season pass supervisor. Three of four kids graduated college, and in 1977 I had an “insulin shock” precursor to diabetes. There were other health issues such as huge food and chemical allergies, going back for years. My local doctor advised I stop working. All four kids had moved elsewhere, so I returned to friends, this time in Southern California. I lived a short time in Marin County (north of San Francisco), but returned to San Diego for better health care.

My apartment was sprayed with the pesticides that summer of 1981 while I was back in Vermont to put the house on the market. Severe muscle spasms in my chest from the nerve gas in pesticides put me on the floor writhing in pain, sure that I was having a heart attack until my doctor told me it was the muscles outside my ribs.

However, because doctors are not taught in medical school how to diagnose (or to recognize and treat chemical poisoning),it took 31/2 years to find an educated doctor whose family had been poisoned in a dioxin spill. He then ordered a “chlorinated pesticide” toxicology test which showed the exact amounts of the various pesticides in my system. Metabolized DDT becomes DDE. Mine was so bad it went off the chart. Without sweating out the toxins in the 160-degree dry saunas, I was headed for a stroke or cancer.

Illnesses of all kinds are coming from petroleum-based chemicals. It is estimated that 90 percent of cancer is caused by the untested 82,000 petro-chemical products on the market since World War II.

Once I began the process of doing the natural health care required in getting better, albeit not cured, plus avoiding as many petroleum-based products and non-toxic environments as possible, I spent time collecting information like many of my fellow multiple chemical sensitive (MCS) people.

For about 20 years, I have been an advocate, activist, support group member and organizer in California, Arizona and back (again) in Vermont.

Like Hector and Jack Rogers, I am happy (on my good days) to try to help people locate products, lawyers (doctors, mostly out of state). I know something about what household chemical products to avoid, what to do to minimize toxic fumes from carpets, and a host of other possible answers to MCS problems. Unfortunately, housing can be a difficult problem because old houses are often moldy and newer homes are built with toxic building materials and paints, but there are a lot of good answers. If I don’t know them I can often direct questions to those people who might help.

We are now a world of about 37 percent allergic or sensitive to chemicals population. We are unprotected from the ongoing production so we have to find ways to protect ourselves with non-toxic products.

If I can help, call 802-234-9212. Going on 82 it’s not always convenient as I must eat or take care of my own health problems, but I’ll simply ask you to call back at a better time. Now perhaps I can join other Vermont peer counselors.

Sallie Bones

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Letters to the Editor

The Independent would love to hear from you. Write to us and tell us what’s on your mind!

Please keep your letter to 500 words or less and include your full name, telephone number and e-mail for verification. All requested information is solely for the purpose of verifying comments. It will not be used for any solicitation purposes.

We reserve the right to edit. Letters that are unsigned, unclear, or in poor taste will not be published. Mail your letter to The Independent, c/o VCIL, 11 East State St., Montpelier, VT 05602, or e-mail them to

Caregiving and Community: Valuing the Human Touch

by Dolly Fleming

“We have stopped for a moment to encounter each other, to meet, to love, to share. This is a precious moment but it is transient. It is a little parenthesis in eternity. If we share with caring, lightheartedness and love, we will create abundance and joy for each other. And this moment will have been worthwhile.”
–Deepak Chopra

One morning driving to work early, I listened to an NPR show about Japan’s recent technological advancements promoting the development of robotics — especially those potentially marketed for “care giving.” It went on to note the work force challenges, demographics, values of advanced assistive technology, even mentioned robotic pets for support and companionship. Now I do not in any way want to minimize the need and potential for assistive technology. It has its place and can be of tremendous support and will very likely play and serve a role far beyond my limited and biased imagination. I recall some amazing devices that may actually comfort people who have autism, as one example. Bless the creative and technological innovators and developers of the world.

And yet, I pause this morning to reflect upon the importance of the humanity, compassion and competence of the direct care workers. If we could put the same effort into supporting and valuing the people who devote their life’s work to direct care, support and care giving, as we do technological exploration, I suspect that the three plagues of loneliness, helplessness and boredom would be significantly reduced and that the dignity, well-being and interdependence of elders and people with disabilities would be more evident.

So I thank you all for the work you are doing to support real people who are in this field. And I hope when my time comes and I need the support of a direct care worker, that it will come from a human being with a heart full of respect and compassion, and that that human being is valued and respected by the chambers of commerce, the halls of statehouses and the streets of our towns and cities.

Dolly Fleming is the executive director of the Community of Vermont Elders.

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The Road to Freedom Goes Through Vermont

by Deborah Lisi-Baker

Jim Ward captures the  stories of people around the country during his Road to Freedom bus tour, including stories shared in Montpelier on Sept. 14.  Photo by Stefanie Monte.
Photo by Stefanie Monte

On September 13th and 14th an unusual bus stopped in Burlington and in Montpelier. The bus and its riders shared a traveling exhibit of disability rights history and a message about protecting the Americans with Disabilities Act. Senator Bernie Sanders, Mayor Kiss and staff from Senator Leahy’s and Representative Welch’s office were on hand to welcome the riders to Burlington, where the mayor proclaimed September 13th ADA Restoration Day. Sanders announced that he has joined Congressman Welch as a sponsor of the ADA Restoration Act. Other speakers during the two days included representatives of the Vermont Center for Independent Living, Green Mountain Self Advocates, Vermont Protection and Advocacy, and the Human Rights Commission.

Jim Ward, founder of ADA Watch and the National Coalition for Disability Rights, organized the national tour. Jim was joined by his wife and children and by other freedom fighters – including respected ADAPT member and photographer Tom Olin. In his remarks Jim Ward mentioned his own love of Vermont, where he lived for several years and worked for the Democratic Party. Ward’s personal experience with the low expectations, stigma and discrimination experienced by individuals with disabilities happened after an episode of being institutionalized and diagnosed with mental illness. Despite being told that he should forget using his political skills and Master’s degree and should settle for less stressful and less rewarding work, he went on to found both ADA Watch and the National Coalition for Disability Rights.

Ward said the Road to Freedom tour started as a campaign to educate people on the ADA and share the remarkable disability rights history and photographs Tom Olin has collected over the years. However, he said, he then realized, “We are really riding the bus as students of the ADA; learning from you and from others who educate us about the meaning of the ADA through your stories and experiences of living with disabilities in America.” During the two-day tour Vermonters joined the tour organizers in calling for strong disability rights protections and the importance of preserving the full rights and entitlements of the ADA as intended by Congress when they passed the 1990 civil rights law. As Senator Sanders said, “We are all one nation and we must enforce the ADA’s original promise of equal rights and full opportunity for all Americans.”

You can share your story and follow the Ride to Freedom at The Vermont ADA Coalition provided support for the freedom bus visit to Vermont. For more information about Vermont ADA activities, contact Sarah Wendell Launderville at VCIL (1-800-639-1522).

Why An ADA Restoration Act?

The ADA Restoration Act seeks to restore the original protections Congress intended when it passed the Americans with Disabilities Act in 1990. Recent court decisions have denied ADA (particularly employment-related) protections to people who manage or deal with their disability with medication, prosthesis or other assistive devices, or other “mitigating measures.” This is particularly true in employment, where individuals with visible and invisible disabilities have been denied a fair court review. Often employers’ assumptions that a person with a disability would not be able to do the job or that disability accommodations would be too costly are based on fears and not on careful and objective review on the abilities and needs of qualified employers with disabilities.

If you believe you have experienced disability-related discrimination in hiring, promotion, reasonable accommodations, or in being harassed, fired, or laid off from work, it is important to get help and share your story. For more information or for assistance, call or e-mail Sarah Wendell Launderville at the Vermont Center for Independent Living (1-800-639-1522 or

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CAT Looking For Lasting Change

EDITOR’S NOTE: This speech was given by Rebecca Shea during the Road to Freedom bus tour on Sept. 14 in Montpelier.

The Vermont Network Against Domestic and Sexual Violence has teamed up with disability, Deaf organizations, and network programs to improve services for survivors of domestic and sexual violence who have disabilities or are Deaf. We are one of 15 sites around the country where this new grant program is being piloted. The project is funded by the Office of Violence Against Women (OVW), Department of Justice.

The project is currently in its planning year. At the table are 11 people representing the Network, Vermont Center for Independent Living, Deaf Vermonters Advocacy Services, Green Mountain Self-Advocates, Vermont Psychiatric Survivors, New Beginnings, Voices Against Violence, and Battered Women Services and Shelter. Each of the individuals and organizations on the team is dedicated to making real change in their organizations and in their communities.

The creating access team, also known as the CAT, has been asked to focus our attention on two to three pilot sites during this round of grant funding. The intention is that these sites will receive intense technical assistance. We are looking for lasting and meaningful change. It is not enough to educate a few people about the ADA requirements and move on, it is time to make real changes. These changes will not be easy, or quick. There will likely be times when we run across a situation with no known solution. In these cases it will be up to all of us to work together to create solutions. I believe I speak for all of us when I say that we welcome those situations, and look forward to passing on what we have learned so that others may benefit from our work.

Together, we will shortly be undertaking a needs assessment project. We are seeking information from service providers, and survivors to find out what ideal services would look like. We are seeking to have all programs not only meet, but exceed ADA requirements. We are also seeking to raise awareness and improve screening and referral policies in disability organizations.

The part of the grant that has me most excited is that we will be working with Network programs and disability groups to foster ongoing relationships and systems that will be in place long after the grant ends. It is our hope that these relationships will lead to creative and customized solutions for everyone that seeks help.

The ADA has offered all of us many guidelines for ways to respond to those with differing needs. It has been a starting point. Now, 17 years later it is time for us not only to meet those guidelines, but to exceed them. We need to look beyond what is required by law, and look to what is required by individuals.

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Vermont Protection & Advocacy Announces FY 2008 Priorities

VP&A Seeks Public Input

Vermont Protection & Advocacy, Inc. (VP&A) is a private nonprofit agency dedicated to defending and advancing the rights of people with mental health and disability issues. We are empowered (and funded) by the federal government to investigate abuse, neglect and serious rights violations. Our 13-member staff teams with the 10-member staff of the Disability Law Project of Vermont Legal Aid (DLP) to create the cross-disability legal protection and advocacy system for Vermont.

This past year VP&A was busy defending the rights of people with disabilities both in individual case work and in systemic change. Of course we can’t list everything here that we have done this year but following are a few of our important activities. VP&A helped settle a claim of employment discrimination against an individual with a developmental disability by obtaining a cash settlement. We helped a recipient of Social Security benefits stop an eviction procedure that was based on her disability and we helped a woman obtain court protections and have her say when her perpetrator was convicted for violating restraining orders protecting her.

VP&A continued our work at the Vermont State Hospital to enforce patients’ rights to be free from unnecessary seclusion and restraint by investigating and filing grievances for about a dozen individuals. Many of those grievances have been recently appealed to the highest level within the department and we are beginning to get positive rulings in favor of our clients at that level. We have been very engaged at the Woodside Juvenile Detention Facility’s detention unit, where we have issued reports about systemic concerns of lack of appropriate facilities, available treatment, screening, accommodations and training of staff. We have also been investigating specific instances of injury to one child detained there for 109 days who sustained a broken wrist during a restraint there. Both of these reports are on our Web site, We are working closely with the department and the staff at Woodside to continue the progress that has been slow in coming in response to the concerns identified in our reports and at bimonthly meetings between VP&A and DCF staff and administrators.

We continue to monitor our settlement agreement with the Department of Corrections that requires an outside expert to evaluate the department’s compliance with new policies to protect prisoners who self-harm. We are also taking an active role in prompting the department to create and implement an ADA policy and training curriculum to help assure that people with disabilities in correctional facilities will be supervised

and cared for by individuals who are aware of the special requirements and protections for this group of prisoners. We continue to do outreach and monitoring at all of the designated psychiatric hospitals in Vermont, as well as doing outreach to residential and community care homes. We are continuing our outreach efforts at events like the Green Mountain Self Advocates’ Voices for Choices Conference. We continue our work on registering voters with disabilities and doing accessibility surveys of polling places across the state. We are working on a project, in collaboration with a professor from UVM’s Center on Disability and Community Inclusion, to determine what the actual barriers to registration and voting are and what VP&A can do to eliminate these barriers. We also continue to have a lot of work under the Protection and Advocacy to Beneficiaries of Social Security (PABSS) program and the Protection and Advocacy for Persons with Traumatic Brain Injury (PATBI) program. We have presented to both state and national audiences on our work helping veterans with TBI. We also republished an updated edition of “Taking Charge: Tools and Tips from the Self-help & Psychiatric Survivor Movement in Vermont.” Again, this is an incomplete list of all the good work our staff has accomplished over the last year. Each of our staff has made real and positive differences in the lives of the many individuals who have contacted VP&A and for whom we have provided information, referrals, short-term assistance, investigations, and litigation.

VP&A is once again publishing the priorities adopted by our board for the current fiscal year (Oct. 1, 2007- Sept. 30, 2008.) We would welcome your thoughts about how our unique system can best serve people with disabilities. VP&A publishes formal priorities for the Protection & Advocacy for Individuals with Mental Illness (PAIMI) program, the Protection & Advocacy for Developmental Disabilities (PADD) program and the Protection & Advocacy for Individual Rights (PAIR) program. Together these programs allow us to advocate for individuals whose disabilities basically fit the definitions in the Americans with Disabilities Act (ADA).

The priorities are the basic guidelines that are formed with input from our advisory councils, our board of directors, our staff (VP&A and DLP), and most importantly, the community at large. Send us comments on the following and you can help us stay connected to the community we serve!

VP&A and its partners do work with limitations! Please understand that we cannot assist everyone who calls, but we try to refer people to other agencies who could assist them.

How can you make your voice heard? Contact VP&A: 1-800-834-7890 Please visit our Web site at

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2008 Priorities for Protection & Advocacy For Individuals With A Mental Illness (PAIMI)

Priority 1: Investigate individual cases of abuse, neglect, and serious rights violations in inpatient facilities (VSH, designated hospitals, designated agencies, emergency rooms, facilities for minors), prisons/jails, and community settings. Priority 2: Reduce the use of seclusion, restraint, coercion and involuntary procedures through systemic efforts. Continue systemic work to create trauma-informed, violence-free and coercion-free mental health treatment environments. Priority 3: Reach out to community settings, designated facilities, emergency rooms, prisons/jails, residential and therapeutic care homes. Monitor conditions and educate residents about rights and self-advocacy. Engage in systems work to improve conditions. Priority 4: Advocate for self-determination and access to alternative treatment options and community integration. Use legal advocacy to enforce and expand rights across the State of Vermont.

2008 Priorities For Protection & Advocacy For People With Developmental Disabilities (PADD)

Health Priority Area

  • Full implementation of EPSDT funded services for children with disabilities.
  • People with disabilities have access to needed health care/long-term care; children with mental health needs will receive needed services and supports.

Education Priority Area

  • Students with disabilities are not harassed; are not unlawfully disciplined, suspended or expelled from their educational program; and receive an appropriate transition from school to employment and independent living. Resources permitting: Students with disabilities are identified, evaluated, and receive a free and appropriate public education and related services.
  • Federal and VT entitlements and procedural protections are preserved.

Quality Assurance Priority Area

  • Olmstead: People with disabilities have access to appropriate services/supports in the least restrictive setting.
  • Children in institutional and other residential and alternative educational settings will receive protection and advocacy services.
  • Access to Developmental Services for children and adults with developmental disabilities.
  • Guardianship: Protection of legal rights in guardianship proceedings. People with developmental disabilities do not have unnecessary guardianships.
  • SSI: Access to and preservation of SSI benefits for income eligible children under age 18 or turning 18 whose benefits are terminated or denied on the basis of disability. Maintain maximum SS benefits for individuals who are disabled and working.
  • Title II ADA: Increased accommodations for people with disabilities in government services including: Reach Up, judicial and corrections systems, and higher education, and including people with disabilities who have been victims of crime, and parents with disabilities.
  • Title III ADA: Individuals with disabilities will have increased access to businesses open to the public.
  • Communication Support Project (Joint priority with DDC and UCE): People with developmental disabilities receive communication support in judicial and other proceedings.
  • Self Determination: People with disabilities make meaningful and informed choices about their services and supports.
  • Abuse Neglect & Exploitation: Adults and children with developmental disabilities living independently, in institutions, or in parental, family, group or developmental homes, are free from abuse, neglect or rights violations.

Housing Priority Area

  • People with disabilities receive needed accommodations in housing.

Employment Priority Area

  • People with disabilities will not be discriminated against in hiring, employment and advancement.

Transportation Priority Area

  • People with disabilities have access to accessible transportation.

2008 Priorities For Protection & Advocacy For Individual Rights (PAIR)

Health Priority Area

  • People with disabilities have access to needed health care/long-term care; children with mental health needs will receive needed services and supports.

Quality Assurance Priority Area

  • Olmstead: People with disabilities have access to appropriate services/supports in the least restrictive setting. SSI: Access to and preservation of SSI benefits for income-eligible children under age 18 or turning 18 whose benefits are terminated or denied on the basis of disability. Maintain maximum SS benefits for individuals who are disabled and working.
  • Title II ADA: Increased accommodations for people with disabilities in government services, Reach Up, judicial and corrections systems – including people with disabilities who have been victims of crime, and parents with disabilities.
  • Title III ADA: Individuals with disabilities will have increased access to businesses open to the public.
  • Abuse Neglect & Exploitation: Adults and children with disabilities living independently, in institutions, or in parental, family, group or developmental homes, are free from abuse, neglect or rights violations.

Housing Priority Area

  • People with disabilities receive needed accommodations in housing.

Employment Priority Area

  • People with disabilities will not be discriminated against in hiring, employment and advancement.

Transportation Priority Area

  • People with disabilities have access to accessible transportation.

For information on any of our programs feel free to contact us.

Vermont Protection & Advocacy
141 Main St.
Montpelier, VT 05602

(802) 229-1355

Visit us on the Web at
Vermont  Protection and Advocacy
Defending and advancing the rights of people
with disabilities and mental health issues
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Deaf Vermonters Advocacy Services

Deaf Vermonters Advocacy Services (DVAS) is formally known as Deaf Victims Advocacy Services. In January 2007, DVAS expanded their services to include not only assistance with domestic violence and sexual assault, but also divorce, child custody, fraud, elder abuse, discrimination, and general accessibility issues for persons with a hearing loss. This name change was brought about with accommodating our expanding services in mind.

DVAS is in the process of creating a whole new look with an updated Web site, so please keep your eye out for these changes on Keri Darling, DVAS director, continues to train E-911 call takers, EMTs, courts, and police on how to communicate with Deaf and Hard of Hearing people, the use of sign language interpreters and technical assistance. If you know of an agency in Vermont that needs this service, please contact Keri at or 1-800-217-9315 (voice).

Alwayne Worcester, Deaf Victims Advocate, continues her Children, Education, and Prevention (CEP) program, educating elementary, middle and high school students on sex education and healthy/unhealthy relationships in a fun environment. She also does a program called “Go Parents Go!” which consists of two different groups. Go Parents Go! Deaf Parenting Skills Group is offered in Barre and this class teaches parents different skills and techniques to polish their parenting styles. Go Parents Go! Support Group is offered in Milton and Brattleboro and this group encourages parents with children to share their knowledge, experiences and frustrations in raising children. If you are interested in learning more about CEP or joining a Go Parents Go! Group, please contact Alwayne at or 1-800-853-9103 (voice).

The newest addition to the DVAS team is Amber Wilhelm, who is the DVAS outreach specialist and victims advocate for Hard of Hearing and Late Deafened individuals. Amber has helped establish the Hearing Loss Advocacy Network (HLAN) program under DVAS. HLAN focuses on Hard of Hearing and Late Deafened individuals who do not use sign language and allows these individuals to use DVAS services. If you are interested in learning more about HLAN, please contact Amber at or 1-800-883-6194 (v). DVAS and HLAN services are always confidential.

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Food Stamps Can Help Folks Thrive

Is it getting harder to make ends meet? Are high health care and fuel costs making it difficult to put food on the table? Does a limited budget keep you from buying the fresh fruits and vegetables that you love to eat?

Food stamps can help you stay healthy and active through hard times. The Food Stamp Program provides monthly benefits to over 50,000 Vermonters and the number is on the rise. Because food stamps are an entitlement program, there are enough benefits for everybody who needs them. Many people with disabilities are eligible for food stamps but do not know it. Times have changed and so have food stamps – new rules make it easier to both qualify and apply.

Here are five things you may not know about the Food Stamp Program:

  • You can own your own home and/or car and still get food stamps.
  • If you are disabled or 65-plus, your monthly benefits will be directly deposited into your bank account.
  • You may not have to go to the food stamp office for your interview. Your worker can conduct your food stamp interview over the phone.
  • If you are 60-plus or disabled, you can deduct medical expenses over $35 from your income, increasing your monthly food stamp allotment.
  • Signing up for food stamps helps Vermont’s economy. The Food Stamp Program brings over $54 million into the state each year.

Why wait? Apply today! Visit or call Economic Services at 1-800-287-0589, for more information or an application.

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New Health Insurance Programs In The Works

As part of the state’s health care reform legislation, new health care programs for uninsured Vermonters will be offered this fall. Some people have been referring to all of these changes with the short-hand name Catamount, although there are several different programs and changes involved.

Some Vermonters will get help paying the premiums to join their employer’s health insurance. This is referred to as ESI premium assistance. ESI stands for Employer Sponsored Insurance.

Others will be able to get assistance to purchase a plan called Catamount Health. Premium assistance for Catamount Health will be available to people who earn up to about $30,000 for an individual, or about $61,000 for a family of four. People who don’t qualify for premium assistance may still be able to purchase a Catamount Health plan.

Two versions of Catamount Health are expected to be offered – one by Blue Cross Blue Shield of Vermont and one by MVP Health Plan. These plans will have coverage for primary care, chronic care and hospital services.

The goal of these new programs is to get more people insured, and there are certain eligibility requirements regarding how someone lost their previous health insurance and how long someone has been uninsured. Many details about these programs are still being worked out, so look for more information this fall.

The application process is expected to begin in October, with coverage now set to begin Nov. 1. The state of Vermont has information on its Web site at A list of people who want to receive more information on Catamount when it becomes available is being kept. You can call 1-800-250-8427 to get your name on the list.

From Vermont Legal Aid’s Justice Quarterly.

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New Home Care Rules and Advocacy Services Help Vermonters Get Quality Care

Vermont has approved new standards for home care agencies operating in Vermont. These rules clarify how service decisions are made and limit when home care agencies can reduce or end services. In most situations written notice must be given. The new rules also give participants the right to appeal a decision to deny or reduce services. Individuals can make a formal complaint to the Division of Licensing and Protection (800-564-2612 or 802-241-2345) when they have concerns about their treatment or care.

Making a complaint or trying to resolve a problem with an agency or care provider can be difficult. Fortunately, there are programs to help if you have questions about your rights or if you want help dealing with concerns about the services you receive.

If you receive home care services through the Department of Disabilities, Aging and Independent Living’s Choices for Care Waiver and have concerns or complaints about your care, Vermont’s Long Term Care Ombudsman can now help resolve problems or assist with a formal appeal. Individuals who are not getting their homecare services through the Choices for Care Waiver (those who pay for home care on their own or through private insurance) can be helped by another advocacy service of Legal Aid, the Health Care Ombudsman. Some of the problems brought up in calls or meetings with an ombudsman include not getting care when it had been promised, not being treated with respect and concerns about care of property or possessions. Many problems can be solved informally with some advocacy assistance, but staff in both programs are also skilled in helping individuals make a formal complaint or appeal a decision. The Long Term Care Ombudsman Program can also provide this assistance for individuals in Vermont nursing homes.

For more information, contact a State Long Term Care Ombudsman, or Health Care Ombudsman, at 1-800-889-2047.

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Advocacy Groups Prepare For 2008 Legislative Session

Both the Community of Vermont Elders and the Vermont Coalition for Disability Rights are in the process of building their legislative agenda for the upcoming Vermont legislative session. COVE holds its annual meeting Oct. 5 in Montpelier and VCDR approves its legislative platform on Nov. 26 in Randolph. Both organizations will continue to be very busy with planning, outreach, and advocacy events before the 2008 legislative session begins in January.

The voices of Vermonters are so important during legislative debate and there are many ways concerned Vermonters can get involved. Sharing your story, speaking up at meetings, and helping a friend or neighbor get to an advocacy event are all ways people are helping make sure that senior and disability issues are heard. To share your concerns or for more information on how you can get involved, contact COVE or VCDR:


P.O. Box 1276
641 Comstock Road, Suite 4
Montpelier, VT 05602
(802) 229-4731


by Helen Johnke

VCIL Benefits to Work  staffers Helen Johnke, right, and Gail Halverson

73 Main Street, Room 402
Montpelier, VT 05602
(802) 223-6140

Advocacy Groups

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Returning to Work: The Challenge

If you receive Social Security Disability Insurance (SSDI), returning to work can be scary, especially if you have heard rumors that if you make too much money, you will lose benefits. There may be incentives that will help you.

The following discussion is only about the Social Security Disability Insurance (SSDI), not Supplemental Security Income (SSI). SSI rules are completely different.

In 2007 if you earn $900 a month or more, before taxes or other deductions are taken, your earnings meet the limit of SGA. Substantial Gainful Activity (SGA) is defined by SSA as “the amount of money that is earned by performance of significant physical and/or mental activities in work for pay or profit.” Every year in January, the amount of SGA changes.

Don’t confuse SGA with Trial work Period (TWP) amounts. They are not the same. TWP amounts are lower and if your earnings are at the TWP level or lower, they won’t cause your checks to stop.

The importance of the SGA limit is that when your earnings are at that amount, then SSA determines that your disability is not preventing you from engaging in substantial activity. SSA may stop your SSDI cash payments.

When SSA is looking at that SGA limit, the most important thing is whether the work you are doing has value to the employer. Are there any Special Work Conditions, Subsidies, or Impairment Related Work Expenses (IRWEs)?

Special Work Conditions are items or services at your job site provided by someone other than your employer that help you to do your work. An example of this could be job coaching, provided by someone other than the employer. A Subsidy exists when an employer pays the worker more in wages than the reasonable value of the actual work that’s performed. Subsidies can be more supervision, extra support or documentation of lower productivity compared to non-disabled workers doing the same or similar work. Impairment Related Work Expenses (IRWEs) are items or services that enable you to work (if you did not have them you would not be able to work). IRWEs are paid for by you and not reimbursable from someone else or by insurance.

A dollar value is computed for the three items above and then “deducted” from your gross monthly income, leaving a “countable income” for determining the SGA. If the value of your income is less, it is more likely that your benefit will continue. If there are no deductions, the gross amount of earnings will be used to determine SGA.

A determination of “making SGA” may not happen until you have established a continuous pattern of being able to work.

The work pattern may be three months or as many as six months. If work stops before three months is up, because of your disability, it may be considered an Unsuccessful Work Attempt and your SSDI cash benefit should resume. Between three and six months, additional factors such as frequent absences or removal of a special condition would need to be present. And the work must have stopped because of your disability or the removal of a special condition related to your disability. Your employer and/or your doctor must support this decision.

If you have had a determination of “cessation” of your SSDI, an unsuccessful work attempt cannot be used to get back your benefit, unless the period of work that caused the “cessation” lasted less than six months and stopped because of your disability.

There are situations when there may be several months of earnings that are not exactly the same and very near the SGA limit. When this happens, SSA may “average” the months to an amount below SGA for each month. An example of this would be a seasonal lawn mowing business that made approximately the same amount of income April through September. Income could possibly be averaged for those five months. Averaging may not exceed 12 months, and must be within a calendar year.

If it is determined that you are making SGA, the first month you make SGA will be considered the “cessation” month of your benefits. You are entitled to the SSDI benefit check for that month and the two months following, which are called “grace months.” After the second grace month, any month you earn over SGA, you should not receive your SSDI check.

If you are in your Extended Period of Eligibility (EPE), and you go below SGA, you should receive your SSDI check. EPE is a work incentive that happens right after the Trial Work Period (TWP) During the 36 months of EPE, any month you do not make SGA; you are entitled to a benefit check. Once your EPE has ended, the first time you exceed SGA, and have had your “cessation” and “grace” months, your benefits will terminate and you should not receive any more benefit checks.

(Note: By earning over SGA during the EPE, benefits aren’t terminated, as you actually stay in eligibility status but do not receive an SSDI check for that month, or any month countable earnings goes over SGA. Termination will happen only once you are out of the EPE, after you have had “cessation” and “grace” months and are making SGA.)

The notice you receive about the “cessation” will say that your disability has ended, but if you have reported all work in a timely manner and the Social Security office has made a timely decision, then you should be able to tell where you are in the process.

Since this process can cover a number of years, and it may be difficult for you to remember each event, find a Benefits to Work Counselor to help you understand what has happened (or should have happened) in the past. That way you will have help knowing what might happen in the future.

If you need help finding out about going back to work, call the Vermont Center for Independent Living’s (VCIL) Benefits to Work Program at 1-800 639-1522 or 229-0501.

Helen Johnke is VCIL’s Benefits to Work specialist/community work incentives coordinator.

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Get Involved In National Advocacy

The National Council on Independent Living is a supporter of the ADA Restoration Act currently being considered by Congress. NCIL is also working on increasing funding for independent living centers. (Vermont’s Independent Living Center, like many others, has been level-funded for over 14 years.)

In addition, NCIL is advocating for important housing, personal care, health care, safety, rights protection and transportation bills. Other disability and senior organizations are also watching these and other bills as they go before Congress. Talk to your favorite advocacy groups and find ways to share your support for the bills and issues that matter to you. Many of these bills could make a real difference for Vermonters.

For more information, to get involved or to request a copy of the complete advocacy packet, contact the Vermont Center for Independent Living at 1-800-639-1522.

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Diabetes Risk And Disability – Partnership Offers Resources For Living Well

The Vermont Department of Health Diabetes Prevention and Control Program (VDH) is teaming up with the Vermont Center for Independent Living (VCIL) to offer new services for people living with disabilities.

What is the connection between diabetes and disability? People with disabilities are living longer, and diabetes increases in all people as we age. Diabetes also increases when physical activity is limited. These same facts apply to people living with other chronic conditions besides diabetes. The Department of Health and VCIL hope that new resources will help people with disabilities have greater access to peer support, sports and wellness services.

The initial planning grant has sponsored the development of a new Web-based listing of accessible recreation and wellness activities on VCIL’s Web site. VCIL is also offering Living Well with a Disability workshops in Central Vermont and later in other areas of Vermont. This program is a peer-to-peer program developed by the University of Montana and several independent living centers. Sue Toolan, a peer counselor in VCIL’s Montpelier office, was one of the first people at VCIL trained to run the workshop.

“The workshop series is well designed. It deals with issues people are concerned about,” Toolan said.

The first workshop series is scheduled to start in October in Montpelier and others are planned for other areas of the state. You do not have to have diabetes to participate in the program. The goal is to help people with diverse disabilities take charge of their health so that secondary conditions like diabetes are avoided or reduced.

The VDH-VCIL partnership plans to prevent, delay, or better manage all chronic health conditions for people living with disabilities. Learn about the new services at or call 1-800-639-1522 (voice/TTY).

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NDAA Breaks Down Barriers One Competition At A Time

The Northeast Disabled Athletic Association (NDAA) is the sponsor of the Vermont Sledcats, a sled hockey team, and offers other programs for athletes with disabilities, including adaptive sailing aboard the fully accessible Martin 16 sailboat complete with sip- and puff helm.

NDAA is a not-for-profit started in 2002 by Vermonters with disabilities, including philosophy professor Patrick Standen and physical therapist Heather Berg. Entirely volunteer-run, NDAA raises money, purchases adapted equipment, supports athletes with physical disabilities and hosts disabled sporting events. NDAA holds several handcycle rides and clinics throughout the Green Mountain State. When the weather turns colder and the snow begins to fly, NDAA offers cross country sit-skiing clinics, wheelchair basketball clinics and equipment rentals.

NDAA is devoted to promoting athletes with physical disabilities in their pursuit of athletic excellence and supports and encourages their participation in sports, leisure activities and athletics. In addition to leading clinics, NDAA rents its equipment, including the Martin 16 sailboat.

NDAA has worked with individuals across Vermont as well as schools, colleges and organizations. The organization has held sled hockey clinics in Manchester and handcycle rides in Stowe. NDAA feel that sports are key to empowering Vermonters with disabilities. The group’s motto is “Breaking Down Barriers One Competition at a Time.”

The 2007-2008 fall/winter sled hockey season begins Oct. 21 with the first practice at 3:30 p.m. in South Burlington’s Cairns Arena. Equipment is provided; all we need are interested players.

If you are interested in participating in an NDAA event or want to learn more about us, check out our Web site at or call 802-862-6322. If you do not have Internet access and would like information on NDAA activities, call VCIL at 1-800-639-1522.

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Where The Rubber Meets The Road

by Morgan W. Brown

Where the rubber meets the road

idiom definition:

Where the rubber meets the road is the most important point for something, the moment of truth. An athlete can train all day, but the race is where the rubber meets the road and they’ll know how good they really are.


The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination

— Don Williams Jr. (American novelist and poet, b. 1968)

In July of this year I experienced three excellent and enjoyable weeks during an out-of-state visit with an old friend, as well as with various family members of mine. The third week of my visit I stayed for two nights with one of my cousins, who is a former marathon runner and now is an Ironman triathlon competitor.

He became the owner of a Univega Modo Vivere road bicycle formerly belonging to an aunt of ours and had used the bike for training prior to his first-ever triathlon last year. However, since he now had his own bike to train and compete with and, wanting to keep the Univega in the family, decided to gift it to me.

While, someday, I would like to obtain a recumbent (also known as a Bent; i.e., a bike ridden in a reclined position, primarily for improved comfort and aerodynamics), with this set of prime wheels underneath me, I think I am all set for a time with what is a bicycle of my dreams and, can therefore wait for a Bent, no matter how long that particular dream may take to fulfill.

One problem, however, is that having absolutely no experience with working on a bicycle of this type and (although my cousin helped me in that regard as much as he was able to do so within those couple of days), it also has been many, many years since I last had a bicycle to ride of any sort, or worked on one for that matter.

Thus, shortly after getting off the bus once back in Montpelier, I walked the bike over to the FreeRide Montpelier ( bicycle cooperative shop. FreeRide Montpelier has been helping me with it in order to keep it up in fine shape both for myself as well as the next generation of my family, who I hope will own it after me.

Going the Extra Mile

Focus on the journey, not the destination. Joy is found not in finishing an activity but in doing it.

— Greg Anderson (Author and founder of the American Wellness Project, b. 1964)

Due to not having ridden a bicycle in about 12 years prior to receiving this bike, I am taking my time and being careful not to overdo it too quickly in doing a lot of distance riding all at once. One beautiful sunny and warm mid-August Friday afternoon, however, I decided to attempt a ride out to Waterbury and back via Route 2. Once at the intended destination, I rode to the public library in town and was able to reserve a half-hour use of the public access computer available there.

The wait to use the computer gave me an additional half-hour to rest up a little as well as to read the local weekly newspaper. It is a nice library, with helpful, friendly staff and volunteers. The trip back was a little more uphill in spots than it was going toward Waterbury, yet not too bad and I did rather well considering I had not been doing a lot of riding up until then. The round-trip ride is a total of 24 miles to the Waterbury public library and back to Montpelier.

It was an excellent ride and I was happy to have gone, especially since I felt better as well as energized both during and after having done so.

Oddly enough, my internal batteries seemed well recharged from the ride and, although I was a little achy afterwards, it was a healthy type of aching and once some needed food was digested and rest was achieved, I was fine and no longer sore at all. Four days later I did the same round-trip ride again. Then six days afterwards, the weather was much too good to pass up bicycle riding and I did the round trip once again, which was my third within an 11-day period. Like the previous rides to Waterbury, this one was yet another enjoyable ride, although one that left me somewhat more achy and tired out for a time.

I was not able to go bicycling for 10 days after my third Waterbury ride due to something that needed repair on the bike before riding it again (i.e., the front brake), which seriously dampened my spirits and frame of mind somewhat until I was able to get it fixed.

Thus, although it was supposed to be a hot and humid day, I rode to Waterbury for the fourth time a week ago (from the day of this initial writing), yet taking it easy and also making sure to have plenty of fluids with me. That ride left me quite sore and tired that evening for some reason. Come the very next day and feeling much better however, I decided to head back on Route 2 toward Middlesex.

This time the plan was to take Route 100B through Moretown and then onto Route 100 to Waitsfield, which I ended up doing. It is a 19-mile trip each way, for a total of 38 miles round trip. The ride there was somewhat tougher than the Waterbury ride and, due to it being more hilly on the way to Waitsfield from Moretown, not just because of the increased distance either.

I had managed to make and survive those hills, even though just barely with the last two just before getting to Waitsfield. The ride back was quite a bit easier, which made it a real pleasure and relief to be sure.

Not only am I beginning to lose some of my excess body weight from riding over 150 miles with these and other smaller rides taken within a 30-day period, but even more importantly and of value to me, is what the riding is accomplishing for my frame of mind, spirit and overall emotional well-being, not to mention my physical health. Nothing could ever replace, nor be as good or healthy a substitute for what exercise or other such activity does for me -nothing whatsoever.

Morgan W. Brown is an activist, writer and blogger on various matters, including housing, homelessness, disabilities and mental health. He lives in Montpelier.

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Disability Happens – K.K.

Kindness of Strangers

Groups of young people hang out on the curbs of our downtown pedestrian mall. Male or female, there is a great deal of black eye liner and nail polish and they use language that makes some people cringe. I often see them when I’m shopping.

One afternoon, I found myself outside some heavy double doors that opened toward me, and I couldn’t maneuver my scooter to get through them. Two leather clad young men slouched outside one of the doors, flicking cigarette ashes into their hands.

“Could you help me?” I asked.

They looked at each other, then at me. “Yeah?,” the taller one asked.

“Er, would you open those doors for me?”

They both straightened up. “Sure,” one said. Each grabbed a door and swung it open as if for entering royalty. I was delighted. Since then, I’ve found myself smiling, thinking of how incredibly fast they had changed from street Goths to polite, helpful fellows. How different similar groups of adolescents look to me now.

This isn’t to say that I’m always greeted with gracious treatment when I ask for help. For example, one day at an office supplies store, I was trying to reach some miniature self-sticking markers, but couldn’t quite get them. When a fellow walked by, I said, “Sir, could you help me?” He didn’t stop, so I repeated, loudly, “Oh, sir! Can you reach something for me?”

He turned slowly, looked down at me stone faced, and said, “What do you want?”

“Those rainbow colored stickies up there,” I pointed.

He came closer, looked up at the stickies, then down at me. “You don’t need ’em,” he said, and abruptly walked off. I was so dumbfounded, I burst out laughing.

Rarely do I get a “no” when I ask for help. Strangers have offered me a hand when I’m loading the scooter on my car and helped push me out of snowed-in curb cuts in winter. Once, I was hurrying along a sidewalk when I misjudged a curve, found myself leaning far to the right and tried to straighten out. Too late. I flew onto the ground as my scooter tipped completely over. I landed with a hard hit to my head and for a few seconds was aware only of feeling as if I were on the Tilt-a-Whirl at the county fair.

“Can I help you?”

It took a moment for my eyes to focus. I saw a petite young woman with shiny black hair. I don’t think she had any teeth. “Are you hurt?,” she asked. “I’m very strong.” I assured her nothing was hurt but my dignity.

Another voice, this time a man from behind me. “How can we help you?”

“Please right my scooter first,” I said. “I’ll need it to sit on when I get up.” Several blurred forms quickly lifted the 150-lb scooter.

“Ready now?” The latest man to join the group was what my mother would have called “scruffy” looking. He had long hair, an untrimmed beard, was covered with tattoos, and had a face that had seen a lot of living.

He and the young woman reached out their hands and with a “1-2-3!” I was up and sitting on my scooter.

My helpers asked how I was. I said I was fine. “But would somebody please look for my head and screw it back on straight?” We all laughed. I thanked them and, in short order, was on my way again, driving a little slower this time.

I’ll probably never see those people again, but they offered strong hands, caring concern, and a few helpful moments out of their lives. I won’t forget the gift I received that day- another example of the kindness of strangers.

(Columnist and educator K.K. Wilder lives in Burlington, VT. Reach her through The Independent or at

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Free Holiday Workshop For Caregivers:
Coping With A Loved One’s Cancer

Workshop Topics

  • Definition of a Caregiver
  • Taking on this Role
  • Caring for the Person with Cancer
  • Coping with Caregiving During the Holidays
  • Managing Family, Friends, Partners and Traditions
  • Long-Distance Caregiving
  • Tips for Taking Care of Yourself
  • Questions

This is a free educational workshop offered by CancerCare. To register, call 1-800-813-4673 or register online at The workshop involves a telephone conference on Nov. 14 from 1:30 to 2:30 p.m. If you are unable to call in at this time, you can read about the workshop on the CancerCare Web site at a later time.

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Community of Vermont Elders Legislative Forums

Oct. 10 – St. Johnsbury House (Home of the St. Johnsbury Senior Meal Program & Good Living Senior Center), 8 a.m.-9:30 a.m.

Oct. 22 – The Forever Young Club (Senior Center located in the basement of the Newport Municipal Building), 122 Main Street, Newport, 8 a.m.-9:30 a.m.

Dec. 5 – Woodstock. (Details to be announced.)

Dec. 6 – Brattleboro. (Details to be announced.)

For more information contact COVE
(802-229-4731 or

To find out about other disability or senior programs, activities, and services, contact the Senior Helpline (1-800-642-5119) or the I-Line at the Vermont Center for Independent Living (1-800-639-1522)

SUBMISSION DEADLINE Submissions must be received by January 4, 2008