Sarah Launderville, executive director of the Vermont Center for Independent Living. VTD/Josh Larkin

Survey results mixed on “end of life” bill

Disability groups oppose “end of life” legislation that would enable patients with terminal illnesses to use prescription drugs to commit suicide. Last month Disability Rights Vermont and the Vermont Center for Independent Living unveiled a survey that was designed to test advocacy messages and determine if Vermonters support or reject “physician assisted suicide.”
At a press conference, both groups stressed that 71 percent of the 400 registered Vermont voters who were polled by Smith Johnson Research agreed with the assertion that “the issue of physician assisted suicide should not be a priority in our Legislature this year.”

The controversial legislation, also known as the Death with Dignity bill, however, appears to have “overwhelming” support, according to the survey. Fifty-one percent of Vermonters approved of the physician assisted suicide, while 41 percent were opposed.

Sarah Launderville, executive director of VCIL, said the disability community is concerned about how the law would affect the ability of low-income Vermonters with disabilities to maintain access to adequate health care. The legislation she said in a statement doesn’t include “safeguards for people in vulnerable situations.”

“With too many uncertainties and risk around physician-assisted suicide, VCIL stays committed to continue the fight against this becoming public policy,” said Launderville.

It would appear that for the time being the state Senate has little interest in taking up S.103, even though the bill has 11 sponsors, or more than a third of the Senate. Sen. Dick Mazza, a leading conservative Democrat, is adamantly opposed to the provision, and last year Senate President Pro Tem John Campbell appeared to have little appetite for pushing the legislation forward. This is the second time lawmakers have introduced a “patient choice” bill. The first proposal in 2007 failed.

Death with Dignity advocates, however, believe the Smith Johnson poll should give lawmakers confidence that Vermonters support giving terminally ill patients legal access to lethal prescription drugs.

Dick Walters, president of Patient Choices Vermont, a political action committee and lobbying group, said in a statement: “Interestingly, both this poll and a Zogby International poll done earlier this year show strong support for a Death with Dignity law in Vermont. The opponents’ attempt to parse the issue with ‘inside Montpelier talk’ hides the fact that Vermonters across all demographics, including those with disabilities, support the effort to have choice at the end of their lives. As the Governor has often stated, the legislature and his administration have the ability to deal with more than a narrow group of issues each year.”

Occupy this?

The Occupy Vermont movement is planning to “occupy” Gov. Peter Shumlin’s State of the State address on Thursday. The “peaceful and non-disruptive action” starts with a gathering at 1 p.m. on the Statehouse steps before members of the group “line the walls” of the House Chamber and use hand signals “to give instant feedback on what we hear,” according to a Facebook post from Montpelier resident Bethany Pombar. Occupy members are encouraged to wear green and sport a message for the governor on their shirts. The local group plans to livestream the event at occupycentralvt.org.

State taps weatherization trust to fund LIHEAP

The state has supplemented a shortfall in Low Income Home Energy Assistance Program with money from the state’s weatherization fund, which helps low-income Vermonters use less fuel to heat their homes.

Gov. Peter Shumlin and legislative leaders announced last week the state would add $6.1 million to the LIHEAP program to make up for a shortfall in federal funding. Of the total state funds, $5.1 million came from money the Legislature set aside in anticipation of federal cuts. The other $1 million came from the state weatherization program.

In December, when it looked like LIHEAP funding could be cut by more than half, the state considered a transfer loan of $2.5 million from the weatherization trust fund to help cover the loss. With Congress pulling through with additional funding, the state has less of a shortfall, but it still took some cash from the weatherization fund.

Some low-income advocates question the logic in taking money from one low-income assistance program and giving it to another.

“I want low-income people to be taken care of, short-term and long-term,” Schlegel said.

Liz Schlegel, community outreach director for Central Vermont Community Action Council, said her organization will push to keep funding for weatherization assistance. A gross receipts tax on non-transportation fuels funds part of the program. An increase in that tax is one possibility.

~Alan Panebaker

Sanders to appear on Colbert show Tuesday

Not many pols in Washington take a constitutional amendment to eliminate the notion of corporate personhood as seriously as Sen. Bernie Sanders, I-Vt., does. After all, the junior senator has made America’s corporatocracy the familiar whipping boy of his foments on monied interests for as long as he’s been in Congress.

And what better venue than Comedy Central for venting his spleen on all things big business? Sanders will appear on the Colbert Report Tuesday night to talk about his proposal to restrict corporate campaign speech rights. His proposed constitutional amendment (Saving American Democracy Amendment) would reverse Citizens United, a landmark 2010 U.S. Supreme Court decision that permits companies and unions to spend as much as money they want on campaign ads.

The Saving American Democracy Amendment does not prevent unions from using the dues and donations of their workers, however, although it would subject their political activities to laws limiting spending and expenditures.

Here’s the proposed amendment, introduced by Sanders and Florida Congressman Ted Deutch:

Proposing an amendment to the Constitution of the United States to expressly exclude for-profit corporations from the rights given to natural persons by the Constitution of the United States, prohibit corporate spending in all elections, and affirm the authority of Congress and the States to regulate corporations and to regulate and set limits on all election contributions and expenditures.

Resolved, That the following article is proposed as an amendment to the Constitution of the United States, which shall be valid to all intents and purposes as part of the Constitution when ratified by the legislatures o three-fourths of the several States within seven years after the date of its submission for ratification:

SECTION 1. The rights protected by the Constitution of the United States are the rights of natural persons and do not extend to for-profit corporations, limited liability companies, or other private entities established for business purposes or to promote business interests under the laws of any state, the United States, or any foreign state.

SECTION 2. Such corporate and other private entities established under law are subject to regulation by the people through the legislative process so long as such regulations are consistent with the powers of Congress and the States and do not limit the freedom of the press.

SECTION 3. Such corporate and other private entities shall be prohibited from making contributions or expenditures in any election of any candidate for public office or the vote upon any ballot measure submitted to the people.

SECTION 4. Congress and the States shall have the power to regulate and set limits on all election contributions and expenditures, including a candidate’s own spending, and to authorize the establishment of political committees to receive, spend, and publicly disclose the sources of those contributions and expenditures.’’

~Greg Guma

Shumlin: “Wet shelters” for homeless worth exploring

Just before Christmas, Paul O’Toole, a homeless man with a drinking problem, died of hypothermia in Burlington. The former carpenter couldn’t stay in local shelters because of his substance abuse issues. He was found dead, lying on a heating grate, on Dec. 21, according to the Burlington Free Press.

O’Toole’s death reignited debate about whether the state should offer “wet shelters” for people with drug and alcohol problems who live on the street. Last week Gov. Peter Shumlin told reporters he would explore the idea.

The video was shot by Morgan Brown.

VTDigger

Tracy Thresher communicates by typing with an audience at the Statehouse on Wednesday

Scores of Vermonters with physical, developmental and psychiatric disabilities gathered at the Statehouse Wednesday to meet with their legislators. Some traveled long distances to explain the effect of budget cuts on their hopes of living independent, productive and meaningful lives.

They had another message, too. As Ed Paquin, the executive director of Disability Rights Vermont put it, “A disability is a natural part of the human experience. It’s not a basis for discrimination.”

Two pieces of legislation drew extensive discussion. One (introduced in the House as H.399 and in the Senate as S.90) would require updating state statutes to use respectful language in referring to people with disabilities. Max Barrows, outreach coordinator for Green Mountain Self Advocates, presented the change as a first step toward changing public perception. Terms like “mental retardation” cause “people to look down on us,” he said. “It implies we’re not capable of doing anything in society.”

Kyle Moriarty, a 20-year-old wearing chinos and a baseball cap, typed out a message on a laptop. It was translated by a voice synthesizer. “I want people to know that we are productive members of our community,” he said. “The ‘R’ word makes us look less intelligent.”

Barrows linked disrespect with increased rates of abuse of children and adults with disabilities. His next target is social networking sites, where the ‘R’ word is a common put-down.

Marty Roberts of Vermont Psychiatric Survivors advocated using “person first” language. Rather than saying someone is mentally ill or a schizophrenic or is an addict, she suggested saying a person “has a mental health challenge or is diagnosed with a mental illness or has lived experience with mental health challenges. You’re looking at a person first,” she said.

A bill that would expand involuntary medication of people with psychiatric disabilities, S.88, evoked passionate opposition.

Paquin explained that compared to the existing law, “this proposal squeezes lengths of time. There’s already been testimony by a court administrator and a judge who’s heard many of these cases, who said the time frames they’re looking at are completely unrealistic. It would essentially increase the amount of involuntary treatment that goes on because it would allow them to fold in a forced med hearing with a commitment hearing.”

Before the recession, Paquin said, the census at the state hospital was declining, but now the state hospital and the psychiatric units in local hospitals are usually full – perhaps because of cuts in community services, he observed.

Paquin cited data from the emergency department at Central Vermont Medical Center regarding the number of instances in which a patient with a psychiatric issue was held for more than 12 hours. There were none in the period from February 2007-08. The following year, there were three, with one person being held for 16 hours and another for 20 hours. In 2010-11, there were 10 instances, and one person was held for 63½ hours, Paquin said.

“At a time when the community system is under so much strain,” he said, “I think we really have to be watching for moves like this that violate people’s rights in very fundamental ways.”

The budgets for the Departments of Mental Health and Disabilities, Aging and Independent Living (known as DAIL) contain a broad range of programs with various criteria for services. In addition, the designated agencies (regional service providers) have a degree of autonomy, which means the budget cuts could affect services differently from one region to the next.

The bird’s-eye view of the budget landscape is this, generally: The Shumlin administration proposed 5 percent cuts for the designated agencies, which provide regional support services for Vermonters with mental health and developmental disabilities. The House Appropriations Committee restored 2.5 percent of the funding.

DAIL’s Developmental Services program was budgeted at $148 million for the 2012 fiscal year, the same as for the current year. Advocates point out, though, that since new people enter the system every year, level funding effectively translates into a budget cut for people already receiving services.

Karen Schwartz, director of the Vermont Developmental Disabilities Council, explained that level funding would create a $7.75 million shortfall in the money needed to provide services for the increased Developmental Services caseload. Tuesday, the House Appropriations Committee acted to halve the shortfall that level funding would create.

Before the advocates dispersed to visit their legislators, they talked about how losing services would affect their lives. Many were afraid they would be unable to work.

Nicole LeBlanc, “the guardian of inclusion” and a member of Green Mountain Self Advocates, observed that “this is the fourth year of cuts, even though there is increasing need.

“It is not acceptable to cut services from existing people to fund services to new people,” she declared. “When agencies get cut, services get cut. We’re concerned that services won’t be individualized anymore.”

LeBlanc noted that agencies used to provide day workers to take people to do shopping or to participate in recreational activities of their own choosing. Some people living with home providers have had their day workers replaced by one-size-fits-all group programs held at the agency, she said.

Kayia Andrews said her fiancé currently has developmental disability services. “I know that if he doesn’t get services, it might make it difficult for him to live on his own. If people don’t get these services, a lot of them will have to move back to their families. We need to do something about this so these people can be on their own. They will be able to be independent if we can keep these developmental services from being cut.”

Ashley Maria Thibodeau, who lives in Lyndonville, read a letter she had written to Gov. Shumlin. “I had a bad childhood,” she said. “My biological mother was a very sick woman and she needs help with her disease. I was six years old when I went into DCF custody. I moved from place to place. I am now 20 years old, and I have a great life with my new family. At the age of 18 years old when I met Northeast Kingdom Human Services for disabled individuals like myself, they have given me great things like a place to live.

“Mr. Shumlin, if I didn’t have NKHS help, I would be on the streets with nothing. . . If I didn’t have my services – I wouldn’t know how to communicate without my service workers. If the budget gets cut, my community hours with my service workers would suffer, too. I need help and guidance with how to communicate with people appropriately, manage money and how to be safe in the community. So please stop cutting our budgets.”

Mark, a bearded man from St. Albans City, has people who cook for him and take him out several times a week. “Otherwise, I don’t go anywhere,” he said. “I have seizures.”

Jesse Breo was diagnosed with Asperger syndrome when he was 14 and was homeless for two years until he started receiving developmental services. “Without my developmental services, I would be homeless again,” he said.

Choices for Care’s respite services illustrate how harsh the cumulative effects of the reductions have become, even with part of the funding restored.

Choices for Care is a long-term care program that uses a Medicaid waiver to pay for services to enable the elderly and people with physical disabilities to stay in their homes. At present, unpaid caregivers can get up to 720 hours of respite services per year. Schwartz noted that under the governor’s budget, the respite hours would have been cut in half, to 360 hours a year, with no variances – not even for a person who might be caring for someone with dementia. The House Appropriations Committee decided to fund 540 hours per year.

Instrumental Activities of Daily Living is another startling example. Instrumental ADLs include housekeeping, shopping for food and paying bills. Ten hours a week of such help used to be provided. It is currently capped at 4 ½ hours. The budget proposal cut it to two hours with no variances, Schwartz said. (The House Appropriations Committee restored half the money and provided some flexibility in the cap.)

Twenty-five years ago, Schwartz said, many of the people she saw advocating for their services Wednesday would have been institutionalized in the Brandon Training School. Instead, “they’re here, talking to their legislators. They have a life, so what a change!”

It’s a change that has personal significance for her: Her 21-year-old son, an only child, has a developmental disability.

“He’s had opportunities that he wouldn’t have had,” Schwartz said, “but I fear for the future.”

VTDigger

BURLINGTON, Vt., Nov. 10 – U.S. Sen. Bernie Sanders (I-Vt.) today hosted representatives of AARP and advocates for the disabled to defend Social Security from attacks by some in Congress.

Social Security provides benefits to more than 124,000 Vermonters, including nearly 20,000 persons with disabilities and almost 10,000 children.

“Social Security is a promise that we cannot and must not break. For 75 years, through good times and bad, Social Security has succeeded in providing a dignified retirement for millions of senior citizens,” Sanders said.

Sanders said he will oppose efforts to privatize Social Security, cut benefits or increase the retirement age to 70. He also supports providing $250 in emergency relief for seniors and disabled veterans facing the second straight year without a cost-of-living adjustment.

“Republicans have falsely claimed that Social Security is going bankrupt and is in crisis. This is a lie. As Vermont’s senator, I will do everything that I can to make sure that Social Security benefits are not cut, the retirement age is not raised to 70, and this life and death program is not privatized.

“Let’s be clear: Social Security is not in crisis and it is not going bankrupt. Social Security has not added a dime to either the federal deficit or the national debt. In fact, Social Security is running a $2.6 trillion surplus that is projected to grow to over $4 trillion by the year 2023. The non-partisan Congressional Budget Office has estimated that even if no changes are made, Social Security will be able to pay full benefits to every eligible American until the year 2039. After that, it will still have enough funding to pay about 80 percent of promised benefits.

“While we all believe that over the long-term, we have got to reduce our record-breaking $13.7 trillion national debt and unsustainable federal deficit, we should not reduce the deficit on the backs of our nation’s most vulnerable seniors by cutting Social Security benefits.

Joining Sanders at the press conference in his Senate office here were Janet Dermody, deputy director of the Vermont Center for Independent Living; Tom Davis, president of the Community of Vermont Elders and Jennifer Wallace-Brodeur, associate state director of AARP Vermont.

Contact: Michael Briggs or Will Wiquist

VTDigger

New Access Regulations Signed

Vermonters Attend Ceremony In Washington, D.C.

The U.S. Department of Justice signed new access regulations before celebrating the 20th anniversary of the signing of the Americans with Disabilities Act on July 26. A few Vermonters were at the White House to witness President Obama publicizing the long-awaited and updated ADA Standards for Accessible Design – including managers from the state’s largest disability rights organization, the Vermont Center for Independent Living.

VCIL Executive Director Sarah Launderville said, “The energy in D.C. was amazing. The president has made a real commitment to people with disabilities in our nation and hearing from members of the administration shows they are taking this seriously. There were commitments made to hire more people with disabilities within the federal government, and the Department of Justice is stepping up their efforts to enforce the ADA.”

Launderville was among the crowd gathered on the White House’s South Lawn listening to the president’s speech.

He told them, “The administration is working to advance the goals of the ADA so it is not just the letter of the law, but the spirit of the law, that’s being applied all across this country.”

VCIL is a statewide disability rights organization that has advocated for the rights of people with disabilities for the past 30 years. VCIL founders were a part of the creation of the original ADA, and since then, staff has worked diligently to interpret the ADA and the associated building guidelines (the ADAAG) for Vermont businesses, municipalities, and citizens.
“It’s about time the new regs were adopted,” said VCIL Deputy Director Janet Dermody, who also attended the White House ceremony. “Many feel that enforcement of the ADA in Vermont is lacking and these new guidelines answer many questions and add clarity to decisions faced by those designing, altering and building in our communities.”

In general, these final rules will take effect six months after the date on which they are published in the Federal Register. Compliance with the 2010 Standards for Accessible Design is permitted after that date, but not required until 18 months after the date of publication.

Access isn’t only about facilities. The DOJ additionally amended its ADA Titles II & III making changes to rules regarding, most notably: service animals, power driven mobility devices, hotel reservations, and effective communication.

VCIL will be offering training in 2011 in addition to its ongoing technical assistance on the ADA and its associated accessibility guidelines (the ADAAG). VCIL is supported by the regional DBTAC ADA Technical Assistance provider – New England ADA Center from the National Institute of Rehabilitation and Research (NIDRR).

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VTDigger

MONTPELIER – The 20th anniversary of the signing of the Americans with Disabilities Act will be celebrated on the Statehouse lawn July 22 from 11 a.m. to 5 p.m. The theme of this year’s event is “What Are You Doing for the ADA?”

For the first time ever, the ADA celebration will feature a community dance. The Inaccessibles, VCIL’s house band for inclusive dance tunes, will be rocking a variety of classic rock songs beginning at 3 p.m.

The event will also include a free picnic lunch and the presentation of the 5th Annual Deborah Lisi-Baker Leader of Tomorrow Award. Rides on adaptive bicycles will be available. Master of ceremonies will be Vermont Center for Independent Living Executive Director Sarah Launderville. A variety of local, state and federal dignitaries are expected to attend.

VCIL and the Division for the Blind and Visually Impaired are sponsoring this year’s celebration. Co-sponsors include Disability Rights Vermont, the Vermont Developmental Disabilities Council, VABIR, the Vermont Human Rights Commission, VTrans, the Vermont Department of Libraries Special Services Unit, Vermont Adaptive Ski & Sports, the Vermont Statewide Independent Living Council, the Vermont Department of Disabilities, Aging & Independent Living, VocRehab Vermont, the Vermont Assistive

Technology Program, the VT AT Reuse Project and Vermont Family Network. A number of local businesses and organizations have donated food and raffle prizes for the event.

Congress passed the Americans with Disabilities Act in 1990 with an eye toward preventing discrimination, in all aspects of society, against people with disabilities.

President George H.W. Bush signed the act into law, proclaiming, “Let the shameful walls of exclusion finally come tumbling down.”

ASL interpreters will be available. For more information, please call Ericka at 229-0501 or 1-800-639-1522.

VTDigger

Advocates, employees and former patients are outraged by Douglas administration’s decision to close the Canteen at the Vermont State Hospital. They say it’s the only place left for patients to get a break from the hospital’s locked down wards. In order of appearance: Malcolm Sawyer, former VSH patient; Joe Yoder, a psychiatric technician for VSH; Sarah Lunderville, executive director of the Vermont Center for Independent Living; Curtis Sinclair, Canteen coordinator; and Michael Sabourin, a patient advocate.

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