Volume 15, Number 1
A Vermont publication for elders and people with disabilities
Table of contents:
- Introduction from Deborah-Lisi-Baker
- Letters to the Editor: True Advocacy Rises Above Petty Squabbles
– Finding Our Way Through A Political Season
– Town Meeting And Legislative Study Profile Challenges Facing Direct Care Workers
- VCDR Legislative Update
- How A Bill Becomes Law And How You Can Get Involved
- Affordable Denture Financing Available
- Vermont News & Views
– Problems Persist For Dual-Eligibles
– GCEPD Seeks Nominations for 2008 Governor’s Awards
– Low-Income Social Security Recipients Must File 2007 Tax Return To Receive Economic Stimulus Check
– 2008 Late Enrollment Penalty For Low-Income Subsidy Eligible Beneficiaries Nixed
– Web Site Helps Get AT Devices Into Hands Of Those Who Need Them
- Living Well: Workshop Sees Success
– Information & Referral Blossoms At VCIL
– Youth Leadership Program Seeks Participants
– Your Vote IS Your Voice!
– VP&A Sees Success In Fight Against “Secure Transport”
– Involuntary Medication Once Again Up For Debate
- Disability Happens
- Bulletin Board
– Conference On Universal Design Set
– Multimedia ASL Performance Features Video, Music, Poetry, Comedy And More
– Conference Seeks To Help Youths With Disabilities Move Successfully To Work, College And Adult Life
Crossover to Spring
We open this issue with this glorious photograph by Daniel A. Neary, Jr. Our thanks to him for this gift of art as we wait for the promise of spring to become a reality. This issue includes legislative news, highlights from a town meeting on direct-care workers’ issues, and updates from Vermont Protection & Advocacy. Also, K.K. Wilder helps us consider the issue of pain management in Vermont. Your letters and responses to this issue are welcome.
— Deborah Lisi-Baker, Editor
Letters to the Editor
As always, I thoroughly enjoyed reading everything above your byline in The Independent, Autumn 2007 edition. Thank you for the intelligence, insight, courage and compassion you bring to discussions of social justice.
May I challenge you? In the cover essay, you wrote of “fighting for services and fighting for resources.” Given the issues and the players, I invite you to use your position of leadership by recasting senior and disabled advocacy as claiming rather than fighting for what is due.
Using conflict or fighting seems like sinking to the unhealthy level of those holding the goods. True advocacy, I believe, is a mighty and noble calling, an activity that rises above petty squabbles over who deserves what. Advocates are visionaries who educate the masses about inalienable rights and the rightness of equitable distribution of goods and services. Advocates awaken the sleeping, not by fighting, but by enlightening.
Living in a country settled by those who fought and slaughtered the natives for ownership of the continent and all its bounty, we Americans are raised to think everything of value must be won in a fight. We have a war on cancer, a war on drugs and a war against terrorism.
Is it possible that as long as we regard our efforts as a war, no one will ever win? Is it possible for us to conduct ourselves in a civil yet mighty way, to claim both rights and community for all?
We all say we want peace and harmony, within our families and across the planet. Let us all take a vow to act as peacemakers, achieving the important goals of equality and liberty for all. Rather than fighting, let us be upstanding, claiming what is rightfully owed, and teaching others about choosing true, lived democracy over exploitation and abandonment.
by Deborah Lisi-Baker
I look at Dan Neary’s photograph of the woods, snow spread under the bare branches, light moving through the trees and imagine being there: the snow against my boots, the smell of evergreen and earth, the rustle of movement nearby. In a political season it is good to be still for a minute – wherever we are – and remember that both the land around us and the lives of strangers are as much a part of our lives as our daily routines and the habits of people with whom we are more familiar. The lives of strangers touch ours in mysterious ways just as the land we live in offers both gifts and obligations.
The news coverage in the last few weeks carried reminders of the affordable housing shortage here in Vermont as well as the national problems with credit and oil costs and the suffering of war. Both civilians and soldiers from all sides of the conflicts live intimately with that suffering. The man who put 4,000 flags up in a field on the Waitsfield-Warren line to honor the lives and the deaths of each soldier lost to us in this war also told news reporters that he thinks of civilian lives and losses as he plants these flags.
Civilian life is better here than in war-torn countries across the globe but we are having a hard time figuring out how to pay for needed resources and how to pay for the high cost of housing, fuel, education and health care.
Conversations on the state budget are very difficult these days and the tone of these conversations in the Statehouse, in community meetings, in hallway conversations and in state offices is uncertain and troubled. In a local paper, Sen. Illluzzi reminds us that the lack of affordable housing affects employers and those who need employment; Vermont’s Affordable Housing Coalition lets us know that the House housing bill includes some important protections for affordable housing; the Community of Vermont Elders is in the Statehouse with disability organizations calling for resources and support for direct-care workers; and VCDR member organizations are contacting their legislators about keeping state Medicaid programs affordable, funding more developmental services funding for graduates, money for the services of the Vermont Association for the Blind, funding for VCIL’s home modification, youth leadership and peer advocacy counseling services. VCIL is also worried about funding for the Housing and Conservation Trust Fund, a key supporter of home modifications and other land and housing initiatives.
In the end, the budget will be a compromise between the House and the Senate, a compromised shaped by debates and compromise with the governor and his administration. How do our voices and experience fit into this debate?
By speaking up and speaking out, seniors, individuals with disabilities and low-income Vermonters inform the debate and hopefully help our elected officials and legislators make balanced decisions during these difficult economic times.
It is easy, these days, to say “Why bother?” But it is still a fact that – for better or for worse – one story can make public policy and shape a budget. For seniors and individuals with disabilities and low-income Vermonters to be served by the current budget debate, more of our stories must be shared. If you are worried about housing, or health care, or employment, or disability and senior services, your voice can make a difference and organizations like the Community of Vermont Elders, the Vermont Coalition for Disability Rights, the Affordable Housing Coalition and the Low Income Advocacy Council and your legislators know that your story can help build a fairer budget for Vermont.
MONTPELIER – At a recent “Town Meeting on Direct Care Workforce Issues” sponsored by U.S. Sen. Bernie Sanders, seniors, individuals with disabilities, workforce advocates and direct-care workers themselves came together in support of Vermont’s direct care workers and family caregivers. Advocates discussed findings from a new study on the direct-care workforce in Vermont. The report, which went to the Legislature in March, reveals that wages, benefits, training and career development opportunities are all critical to retaining valuable caregivers in the long-term care industry. Funded by the Department of Disabilities, Aging and Independent Living, the Legislative Study of the Direct Care Workforce focused on supporting the direct-care workforce in Vermont and highlighted changes needed to address an emerging crisis: that the number of Vermonters who need direct care services is growing as the direct-care workforce continues to decline.
Direct-care workers provide crucial hands-on assistance to persons who are unable to perform basic activities of daily living (ADL) that many take for granted. ADL examples include getting out of bed, attending to personal hygiene and eating. Some people need help communicating, remembering, or simply engaging in meaningful activities. These workers provide 80 to 90 percent of the hands-on care for Vermont’s elders, children and adults with disabilities, and persons with chronic conditions.
Legislative Study Results
The study analyzed survey responses from 1,700 direct-care workers in Vermont regarding wages, benefits, training, and career development. Key findings include:
- Only half of the respondents expect to receive a raise. The forces of inflation, without annual cost-of-living increases, actually decrease wages over time. Higher wages and reasonable cost-of-living increases would dramatically increase the length of time caregivers stay in the profession.
- One-third of direct-care workers in Vermont receive health insurance coverage as an employment benefit. However, workers with employee-sponsored health coverage remain in their jobs an average of 2.5 years longer.
- Only 42 percent of respondents received formal job training. Those caregivers who do receive professional training remain in their jobs significantly longer.
- Direct-care workers currently see few opportunities for advancement because of a lack of standardized curricula. However, national research shows that workers who receive training, recognition, and advancement opportunities tend to remain in their profession.
Other results from the study show that 64 percent of Vermont’s current direct-care workers are over the age of 40.
PHI, a nonprofit organization that supports quality long-term care by improving direct-care jobs and served on the study group’s advisory board, notes that the Vermont study echoes their findings that direct-care workers are truly invested in their work and want to make a positive difference in other people’s lives.
However, PHI also notes that the common industry practices – including low wages, few opportunities for advancement, lack of training, and inadequate benefits – make it difficult to attract new workers to this field. This problem will only grow in the future, unless the state focuses on improving the quality of direct-care jobs.
At Sen. Sanders’ town meeting, staff and volunteers from the Community of Vermont Elders, the Vermont Association for Professional Care Providers, the Vermont Center for Independent Living and PHI spoke about the study and the importance of respecting and honoring those who choose to do direct care work.
Several direct-care workers spoke candidly about the profession, noting the low wages, poor benefits, and lack of training for what is a remarkably difficult job.
“I’ve been working as a direct-care worker for 23 years. It can be back-breaking and emotionally wrenching work,” said Diane McGill, a licensed nursing assistant at Chittenden Grand Isle Visiting Nurse Association. “We are caring for people whose lives have been drastically altered due to debilitating conditions such as spinal cord injuries, multiple sclerosis, cerebral palsy, mental disorders, etc.”
She added, “”Why do I do it? I guess it’s in my heart. I do it because I make a difference in people’s lives. They’re so grateful for the help, whether that involves physically moving them with a lift or something as small as picking up a pencil off the floor. When I make them smile or laugh, that makes my whole day.”
For more information, contact the Community of Vermont Elders or the Vermont Association of Professional Care Providers at 802-229-4731.
by Deborah Lisi-Baker
The Vermont Coalition for Disability Rights has had a busy and challenging year. Funding cuts meant that VCDR had to reduce staff and operating expenses. VCDR member organizations are volunteering more of their time to continue VCDR activities. Project grants from the Vermont Developmental Disabilities Council, individual donations and ongoing membership dues help to fund our work in 2008. VCDR’s long history of cross-disability advocacy in Vermont is something we all believe in and are committed to continuing.
For this reason, VCDR is particularly pleased to have the services of Lynne Vitzhum and Mary Claire Carroll working with us as part-time legislative liaisons. Lynne and Mary Claire help VCDR staff and volunteers monitor key legislation, alert VCDR members of hearings and committee action, and analyze the impact of different administration or legislative proposals.
They do similar work for several other advocacy and service organizations and have a strong background in Vermont’s disability, low-income and family and children services.
This has been a challenging legislative session for both legislators and advocates. Most committees have spent the first months of the session working intensely on one or two major bills. Disability issues have been important parts of legislative consideration in bills relating to guardianship, child abuse, child custody, insurance coverage, education, and the state budget. Bills and budget deliberations change daily so this summary just gives readers a “point in time” summary of what has happened with a few of the bills VCDR is monitoring and with the budget.
A final end-of-session summary will be printed in the Summer issue of The Independent, but you can also contact us to ask for an update. Visitors to the Vermont State Legislature’s Web page (www.leg.state.vt.us) can type in a bill number or sponsor’s name to view legislative language and to check out the weekly schedule for legislative committees.
The Appropriations Bill is now in Senate Appropriations. It is a very tight budget year with little funding for new programs and advocates of existing programs worried about waiting lists and unmet need. VCDR members and other disability advocates have been contacting their legislators and members of the House and Senate Appropriation committees about budget issues including increasing funding for high school graduates in the developmental services budget, increasing wages in the state’s Attendant Services Program, protecting affordable access to Medicaid benefits and the new Catamount Health Program, a proposal for the creation of a TBI Fund and request for funding for existing programs at the Vermont Association for the Blind and Vermont Center for Independent Living.
Here is some additional information on bills that VCDR and member organizations have been working on or monitoring. The VCDR Web site includes updated reports on the status of these bills and other VCDR priorities.
- H.854 (Education Funding): Recently the House voted to repeal the so-called “two vote provision” of the education budget bill passed in 2007. This is good news for families of children with disabilities who would be singled out as the cause of obvious increases in a school’s budget. Whether the Senate will act to pass H.864 (or this part of it) is in question, since it negates part of a bill they created and successfully passed last year.
- H.617 (Guardianship): The bill as voted out removes the list of medical procedures that must be approved by the probate court and substitutes language about keeping the interests of the person under guardianship at the forefront of any decision making and stipulates certain conditions in which a guardian must always seek the permission of the court: 1. If the person under guardianship objects to the procedure; 2. if a previous court order required permission from the court for that procedure (unless seeking a court order would be impracticable due to the imminent death of the person under guardianship); 3. before consenting to a do-not-resuscitate order unless the person under guardianship has an advance directive or unless a clinician certifies that an attempt to resuscitate would not prevent death.
- H.635 (differentiated response to reports of child abuse): The current draft of the bill includes language that requires rule making (for assessments and investigations) by the Department of Children and Families to “strike a balance between protecting children and respecting the rights of a parent or guardian with disabilities.” The rules must also recognize that “persons with a disability can be successful parents.” The rules shall also include the possible use of adaptive equipment and supports.
- H.629 (needs of prisoners with mental illness and disabilities): House Human Services sent this bill back to House Institutions with language recommendations that would improve the evaluation system for inmates with mental illness or developmental disabilities. Most importantly, the protections recommended by the committee were written in statutory language and do not include proposed changes to the rules process that would have lessened rights protections for individuals with disabilities.
- S.280 (a prosthetics parity bill which protects health insurance coverage of prosthetics) and S.281 (end-of-life care and pain management bill): Both have passed the Senate and have been taken up by the House and sent to House Human Services. As passed by the Senate, S.281 requires that the Department of Health convene a task force to assess available information and data relating to the quality of both end-of-life care and pain management for individuals with chronic conditions. VCDR supports the current version of the bill and will be following it closely as it moves through House Human Services.
- S.271 (extending child custody for children with disabilities) is in Senate Judiciary. This bill would amend Vermont statutes to allow the court to consider requests to continue custody payments to age 22 when loss of custody payments would jeopardize housing, safety and community supports.
- S.279 & H.677 (calling for a work incentives task force and report): The Secretary of the Agency of Human Services has agreed to carry out this review of the impact of Vermont’s asset and income requirements for eligibility for Medicaid for employed individuals with disabilities without passage of a bill requiring this study. They have agreed to submit this report to the Legislature next year.
Studies and Reports
A “Report to the Legislature on Services to Individuals with Autism Spectrum Disorders” makes recommendations on how to improve services to the growing number of individuals diagnosed with autism spectrum disorders and their families. The study was developed with input from hundreds of Vermonters. Key recommendations include increased early identification and diagnosis, early intervention, improved state coordination of services, improved access to information, training, and technical assistance, workforce development, and improving technical assistance and consultation to schools and agencies to help develop cost-effective delivery of services and promote use of best practices in local schools and regional services. We expect that the findings in this report will continue to be a major focus of VCDR’s summer and fall planning activities and in the 2009 legislative session.
A Study of the Direct Care Workforce carried out by the Department of Disabilities, Aging and Independent Living (DAIL) was submitted to the Legislature recently and concerned senior and disability advocates are calling for legislative hearings on the report. Representative Ann Pugh, chair of the House Human Services Committee, has said her committee will be taking testimony on this study as part of a broader hearing on long-term care issues she is scheduling for late April. The study highlights the need for higher wages and other benefits for individuals providing direct care to seniors and individuals with disabilities and seniors in their homes and communities and in health and residential care setting. Other recommendations include the creation of a task force to oversee action on workforce issues and support for on-the-job training and stable and rewarding career options for direct care workers.
For more information about legislative activity, don’t hesitate to call or e-mail VCDR. Please join us on April 15 for Disability Awareness Day events. The schedule is posted on our Web site, www.vcdr.org.
Vermont Coalition for Disability Rights
“Nothing About Us Without Us.”
73 Main Street, Room 402
Montpelier, VT 05602
Lawmaking is a confusing process but it does follow certain rules. Vermont has a two-year legislative cycle. Legislators are elected and have two years to try to get their preferred legislation passed. This process starts with someone bringing a legislator an idea. Ideas for bills come from a variety of sources. An individual, business, state agency or public interest group can bring a concern to a local legislator or a legislative committee may identify a problem with existing law or decide that new legislation is needed to address specific concerns.
The senator or representative sponsor brings the idea for a bill to staff at Legislative Council who researches the proposal. They also find out where it best fits in Vermont law and check to see if it would conflict with or require changes in existing law. A bill can create a new law or amend or get rid of an existing law. They draft the proposal so that it follows standard legislative format for bills. The bill is then introduced by sponsoring legislators and is sent to a committee for review. Some bills require review by more than one committee before being sent forward to the full House or Senate for a vote.
If the legislator is willing to sponsor a bill, he or she introduces the bill and works with Legislative Council and members of key committees to help move the bill through the legislative process. Bills often have more than one sponsor and sometimes a bill is introduced in both the House and the Senate. Each bill introduced gets its own title and number and is posted on the Legislative Web site (www.leg.state.vt.us).
The committee may take up the bill quickly or post it “on the wall” for future action. If the bill is taken up by a committee, staff from Legislative Council help the sponsor and legislative committees with any redrafting. A bill may require review and approval by more than one committee before it can be sent to the full House or Senate for a vote.
Bills have to make a “crossover” deadline. This means they need to be voted on and sent to the other legislative body (the House or Senate) for similar review and action by the “crossover” deadline. In Vermont this is usually shortly after Town Meeting Day. The budget bill and some other “committee bills” have a slightly later crossover date.
If it makes it through the floor debate and votes, a bill moves to the other legislative body and is assigned to a committee to begin the process over again. The goal of bill supporters is to have the bill make it though the vote of both the House and the Senate before the end of the biennium (the two-year process for bill review and action). A bill that does not become law before the end of the second year will have to be reintroduced by the new Legislature.
The bill that is introduced in January can change dramatically as it moves through committees and floor debate during the winter and spring. The committee chair schedules testimony on prioritized bills. The committee can vote to support the bill as amended; put it on the calendar for a House or Senate floor vote; or send it to another committee for further review.
Throughout the whole process, but particularly during committee review, advocacy and public interest groups and concerned individuals can monitor work on the committee, call or write their legislators, ask to testify on the bill and can suggest language changes. Both opponents and supporters have a chance to speak and often the state officials are also asked to give testimony. Both the House and the Senate hold public hearings and give advocacy groups chances to request time to testify.
The budget goes through a slightly different process. In January the governor sends the Legislature the administration’s proposal for next year’s budget. It is taken up by the House first and then moves to the Senate. A joint conference committee made up of representatives of the House and the Senate meets to resolve any differences between the House proposal and the Senate proposal. Often this is the last work of the Legislature and the final vote on the budget has been known to take place very late at night somewhere between late April and mid-May.
Making it through the House and Senate is only the first step: After a bill passes both the House and the Senate it is sent to the governor before becoming law.
The governor may sign the bill, making it a law, or veto it. If the bill is vetoed, the Legislature may choose to override the veto by passing the bill again with a two-thirds majority. The governor may also choose to do nothing, in which case the bill becomes law after five days, not including Sundays.
The Independence Fund is including denture purchases as one of the areas supported by the fund as a form of assistive technology.
“The Independence Fund Board is pleased to be able to support Vermonters where the lack of dentures substantially limits their activities,” Chairman Mike Richman announced recently.
The Independence Fund provides affordable loans to help Vermonters buy assistive equipment including wheelchairs, hearing aids, home modifications and computer technology.
Dentures will be considered assistive technology if one or more of the following criteria are met: applicant can document how the acquisition of dentures addresses a disability-related need; dentures are recommended by a dentist as addressing a disability-related need; where it is established that the individual’s dental condition (lack of teeth) is such that it substantially limits the major life activity of eating or is a basis for discrimination in employment, education, credit or other important activities which enhance the quality and improvement of living.
For more information, contact Eldon Carvey at 1-800-865-8328, ext. 128.
Vermont News & Views
Attorneys from Vermont Legal Aid have seen some problems in the last year for clients who are “dual-eligible” – who get both Medicare and Medicaid health insurance. Dual-eligibles are typically either low-income elderly, or younger people with disabilities who receive Medicare through Social Security Disability Insurance. Medicare and Medicaid both have complex rules. For clients who have both kinds of insurance, problems can come up when the two systems bump into each other. As a result, it can be even more difficult for duals to get medically necessary health care equipment, supplies and services than for people who have either insurance alone.
When a person gets both Medicare and Medicaid, Medicare is the primary payer. Doctors and medical suppliers first bill Medicare. Then they look to Medicaid for any payments that Medicare does not cover. Doctors and suppliers usually have to take Medicare’s rate as full payment. Medicare then pays 80 percent of the cost, and Medicaid picks up the other 20 percent.
For some kinds of medical equipment, especially very expensive items or special wheelchairs, Medicare’s payment rate may not even cover the cost to the suppliers, who sometimes refuse to order the item. In the past, VLA has worked out a system with Vermont Medicaid to “override” this problem, letting clients bypass Medicare and get these items. In the last year, we saw some cases where this override system broke down, and people were left without needed equipment or supplies. Recent cases have also seen some delays in wheelchair repairs. VLA has met with Vermont Medicaid to try to address these issues.
Similar problems also come up around medical supplies such as catheters and ostomy bags. In these cases, Medicare has a cap on the amount of supplies someone can get each month. Vermont Medicaid has told VLA that if a client needs medical supplies beyond the Medicare cap, Medicaid may be able to pay for the extras. At a minimum, they will look at a request for more supplies.
This is, unfortunately, not a new situation. VLA has been talking with Medicaid about the problems faced by dual-eligibles for many years. Yet the problems persist. Besides working with Medicaid, one thing that everyone can do to help is to talk to the Vermont congressional delegation about the inadequate Medicare reimbursement rates. Medicaid is required by law to pay suppliers at a rate that ensures Medicaid recipients can get all medically necessary services and equipment. Medicare does not have this same requirement. A change in Medicare payment rates could help to address some of these problems for dual-eligibles.
These are complex issues, involving the way Medicare, Medicaid, and medical supply companies work together. Clients may feel overwhelmed trying to work through two very complex insurance systems. If you know of dual-eligibles who are having trouble getting needed medical services or supplies, please encourage them to contact Vermont Legal Aid, the Senior Citizens Law Project or the Disability Law Project at 800-889-2047.
From Vermont Legal Aid’s Justice Quarterly.
The Governor’s Committee on Employment of People with Disabilities (GCEPD) is seeking nominations for the 2008 Governor’s Awards. These awards will be presented to individuals, businesses, media or municipalities that have made significant contributions to the employment of people with disabilities. The nomination deadline for the 2008 awards is April 15. The awards will be handed out at the Governor’s Summit on Employment of People with Disabilities, scheduled for June 9 at the Sheraton Hotel in Burlington.
The Governor’s Awards are given in three different categories. The Employment/Accommodation Award is for an employer who reflects the spirit of the Americans with Disabilities Act in their employment practices. The Design/Accessibility Award is for an architect, contractor, business, municipality, recreational facility or entity that has developed innovative and creative solutions for accessible structures, buildings or services, or provided accommodations to create equal and aesthetic access. The Media Award honors print and broadcast reporting that recognizes the importance of equality and dignity regarding disability. A fourth award, the Governor’s Award for Outstanding Effort, may also be given if the committee believes it is appropriate.
People are encouraged to nominate Vermont businesses, individuals or municipalities that have contributed to the employment of people with disabilities. For more information about the GCEPD or nominating procedures for the 2008 awards, please go to the GCEPD Web site at www.hireus.org, or contact Melita DeBellis, Executive Coordinator, Melita@gcepd.org or 802-434-6600.
The National Council on Aging has recently issued some information on receiving economic stimulus checks. To help spur a slowing economy, the IRS started sending tax rebate checks to over 130 million households beginning last May. Up to 20 million Americans who rely primarily on Social Security income qualify for a rebate check.
To qualify for a stimulus tax rebate check, generally a person has to have more than $3,000 in income. Even if a person does not have any earned income, they can still qualify for a stimulus tax rebate check if their Social Security benefits, Veteran’s Affairs (VA) benefits, and/or railroad retirement benefits equal at least $3,000 annually.
To qualify, people must file a 2007 tax return on IRS Forms 1040 or 1040A with the IRS (even if their income is normally low enough that they are not required to file).
In most cases, people will get payments ranging from $300 to $600. Payments increase by $300 for families with dependent children under the age of 17.
The IRS encourages filing a return if possible, by the regular April 15 deadline to get the rebate check in May 2008. Those filing later than April 15, with or without a tax-filing extension, may delay receipt of the rebate check. Those who qualify for a stimulus check will receive one by the end of 2008 if they file by Oct. 15. No rebate checks will be issued after 2008 ends. Receiving a payment under the stimulus package does not have any effect on eligibility for or amount of needs-based benefits programs (i.e. Food Stamps).
The Centers for Medicare & Medicaid Services (CMS) has announced the elimination of the 2008 late enrollment penalty for any beneficiary eligible for the low-income subsidy of the Medicare prescription drug program. Medicare beneficiaries who qualify for the low-income subsidy for Medicare prescription drug coverage may enroll in a Medicare prescription drug plan with no penalty through December 31, 2008.
For more information, contact the Senior Helpline at 1-800-642-5119.
Looking for new or used assistive technology (AT) devices, software or durable medical equipment? Then look no further than the Assistive Technology Exchange in New England’s Web site, a free online “Classifieds” that shows items available for sale or donation.
Log onto www.getATstuff.com to search the listings or to post an AT device you no longer need. The goal of getATstuff is to help get assistive technology devices that are no longer being used into the hands of people who need and can benefit from them.
No Internet access? No problem. Simply call the Assistive Technology Exchange at 1-888-827-2714.
The Living Well with a Disability program is off to a strong start in Montpelier.
The eight-week, 16-hour workshop introduces a process for setting and clarifying goals, as well as teaching skills for generating, implementing and monitoring solutions. Goal setting and problem solving are the framework for developing healthy lifestyles and making the necessary connection between health and function. Keeping quality-of-life issues at the forefront, this workshop teaches skills for the following: preventing health problems, keeping health problems under control, physical conditioning or fitness, developing and maintaining healthy relationships, overcoming depression, information seeking and systems advocacy, goal setting, and making healthy lifestyle changes.
In partnership with the Vermont Department of Health, the Vermont Center for Independent Living (VCIL) is running the Living Well with a Disability workshop. Sue Toolan, peer advocate counselor, and Tom Van Meter are the co-facilitators. The seven participants enrolled have a book to help guide them through the workshop. Worksheets and exercises are placed throughout the materials, giving participants a chance to take concrete examples from their own lives and apply the techniques taught in the workshop. They have an opportunity to share progress or problems. Group discussions and check-ins are important, as is the community that builds around the discussions and shared experiences of participants.
Living Well participants report improvement in outlook and positive changes in daily activity, such as new recreational pursuits or returning to school. Many learn they can pursue meaningful goals despite limitations, and they feel a sense of belonging, acceptance and encouragement by peers.
One participant said, “The workshop provided me the structure and dedicated time to concentrate on this time in my life. Goal setting, problem solving, healthy reactions and communication are universal tools of Living Well from which anyone can benefit.”
Another participant praised Tom Van Meter for making the course interesting and allowing students to participate, adding, “Sue is an inspiring counselor and coordinator of this course.”
The facilitators also had positive things to say about the program. “I have done many trainings in the 20 years I have been with VCIL, but this is by far the best,” said Toolan. “We have a wonderful group of people in our group. It is the group experience that has made the curriculum come alive for me.”
Van Meter said he is satisfied with the group’s progress and looks forward to a successful completion of the first Living Well with a Disability program. “Originally scheduled for eight sessions, we have added two more in order to cover all the material without a sense of rushing through it,” he explained. The group has also decided to add an extra half-hour to the meetings so as to allow for a more relaxed checking-in time.
Van Meter said, “By the third session, we had reached a comfort level that allowed everyone to feel safe enough to share at least some of their thoughts and experiences. This has grown as the weeks have passed. Our format of reading the manual aloud has had a ‘shared experience’ effect on the group, and brought them closer together. Some have asked that we organize a way for them to continue to get together after the workshop is completed.”
|For more information on the next Living Well with a Disability workshop, or to learn more about an LWWD program in your area, please call Sue Toolan at VCIL, 802-229-0501 or 1-800-639-1522|
Beverly Goslant, a longtime VCIL employee, died last year but left a legacy about how important it is to do Information & Referral correctly. She worked tirelessly to build quality and consistency in VCIL’s I&R program.
In an interview conducted last April, Goslant said, “This has been the most rewarding and the most frustrating job I’ve ever had in my life. Rewarding when somebody calls me up and says, ‘Oh this has worked out great. I’ve just gotten all this information and now I just feel like there’s a light at the end of the tunnel.'”
The frustration side stemmed from calls for which there were no clear answers.
Ericka Reil, who is now the I&R specialist in VCIL’s Montpelier office, is carrying on the spirit of Bev’s work. Recently, she shared three stories that illustrate the impact I&R can have on a peer’s life – and on that of an I&R specialist:
When I took the Information and Referral job, here at the Vermont Center for Independent Living, one thing that didn’t cross my mind were the lasting friendships I would make with people I never had met before.
Out of the blue one day, about nine months ago, I received an e-mail from a woman in Georgia asking that I send some information to her because she was thinking of moving up here. After awhile I received e-mails asking for more information about resources. I sent the information down to her. Then another e-mail came asking about housing and I sent that information to her also.
We started e-mailing every now and again with questions and answers. In e-mails I would update her about weather, Vermont and living in Vermont with a disability.
She would e-mail me back about her life. How she has never lived on her own, how her family treated her and really the reason she wanted to come up here is because everyone she knew in Georgia treated her as a child. She was almost afraid to tell me she was autistic because she was afraid I would treat her like a child. But she found that every time she e-mailed I treated her with respect. I never said “No,” or “Are you sure you want to do that?”
I received an e-mail from this woman saying, “Ericka, I am free now, I have an apartment.” It went on to say, “When I move to Vermont, my first stop is to meet you. With your help and others I am FREE. And I promise you one thing, once I’m settled and all unpacked … I will get up early and go somewhere each day, I’m gonna get out, and get connected with folks, make friends, go out to eat, get out and just LIVE BABY!!!!!!”
When people ask me to talk about Information and Referral. I start thinking of the stories that people tell me when they first call. The story of their lives so to speak. The reason why they picked up the phone or wrote me an e-mail.
Let me tell you a story of someone I have never met but who I have talked to via e-mail and on the phone. I keep planning to go up and see him just to say “Hi, I am Ericka.”
I received an e-mail asking me to send information to his address. That happens many times and I didn’t think anything of it. I did notice that the address was not in Vermont but again many times people moving to Vermont e-mail or call requesting information.
Then many months later I get a call. This gentleman did not know what to do. His housing was not what he expected. He was being discriminated against. He talked to me as if he knew me but I could not place him. Then he told me where he was from. Then I remembered. He was the gentleman to whom I had mailed information.
After a long conversation, we got things straightened out. We had a plan; he was laughing. In fact we were both laughing so hard we were crying. When we hung up we made a plan of action of what this gentleman was going to do. I made a referral to have him sign up with our peer advocate program and he followed though with everything.
I now hear stories coming from our Burlington office telling me what an advocate he is now. How funny he is, what’s going on, etc.
What can I say, I am glad I sent him a VCIL information packet.
I don’t believe what has happened to me
I Never Will
They said that I wasn’t gonna make it
Well . I’ve finally made it
I proved all of them wrong
I was damaged badly
My injuries aren’t noticeable
I’m lucky to be alive
My tears are falling
You don’t even want to know the pain of it all
I’m crying, shaking and numb from it all My back is against the wall I’m trying not to fall I look perfectly normal to you Let me tell you something My dreams have died Most of my friends are gone Some of them died Some ran away Some just disappeared with no return
AT LEAST I AM STILL HERE
— by Becca Comeau
Becca Comeau, 15, of Montpelier, wrote the above poem based on her experiences being hit by a car last summer and having a TBI. The teen was in a coma for several weeks after her accident and then spent about four months in a rehabilitation facility. Becca and her mother connected with VCIL after calling the I-Line (1-800-639-1522).
by Dvora Zipkin
VCIL has a Youth Leadership Program for young people with disabilities, ages 15 to 25, from all over the state of Vermont. We are looking for participants and volunteers for a weekend event coming up on April 4-6, and for a summer event in July.
Past participants have made wonderful, positive changes in their lives because of this program. One of the goals is to provide young people with the encouragement to realize their full potential. Participants build pride and self-esteem, working together to learn from each other and share experiences, challenges, and rewards of living with a disability. They learn about independent living, leadership, and self-advocacy. They build a supportive community together.
What is Youth Leadership?
“Leadership development helps young people develop the necessary skills to take charge of their lives and make a positive impact in their communities,” according to the U.S. Department of Labor’s High School/High Tech Program Guide. It is both internal and external. Youth Leadership includes the ability to guide and influence others, and learning about one’s own strengths and challenges, setting goals, and fulfilling them.
Why is the Youth Leadership Program only for youth with disabilities?
“It’s not possible for people with disabilities to truly integrate until we are recognized as having pride in who we are as disabled people,” says Steve Brown, founder of the Institute on Disability Culture. It’s important for young people with disabilities to learn about themselves and each other in a safe, supportive environment, to “have their own space,” and to be with others who have similar experiences.
What will happen at the Youth Leadership Program?
Youth can attend the two-day Bridge Weekend in April and/or the four-day Youth Leadership Forum during the summer. They stay at a hotel or on a college campus, and all meals are provided. It’s like attending a mini-conference. During the program, participants attend workshops, presentations, and discussion groups on a variety of topics, including disability rights, the history of the disability rights movement, self-advocacy skills, career and educational options, and how to make a difference in their own lives and the lives of others. The workshops are experiential, fun, and informative – very different from classes in school. There is also time to have fun, get to know each other, and participate in recreational and social activities.
How can I get involved with the Youth Leadership Program?
The next event is a Bridge Weekend on April 4-6. We are looking for more participants for both this weekend and the summer Youth Leadership Forum. We are also looking for young adults and older adults who would like to attend as mentors for the other participants, or who would like to present a workshop on a particular topic. You never know, it could change your life!
For more information or to request an application, contact the Education Coordinator at 802-229-6413 or 800-639-1522 (voice and TTY).
Why does your vote matter?
Voting gives you the power to decide who will be making decisions about issues that matter to you.
You can choose candidates who support your views on housing, education, health care, Americans with Disability Act enforcement, transportation, community and rehabilitation services, jobs and a lot more!
What are your voting rights?
You can see a ballot in advance.
You can vote early or vote from home.
You have a right to assistance with voting.
Vermont Protection & Advocacy can help
One of Vermont Protection and Advocacy’s most important projects is assisting individuals with disabilities who are interested in voting. With federal funding from the Help America Vote Act of 2002 we are working with disability service providers, advocacy groups, town clerks and individuals to register voters with disabilities and increase participation in the election process.
For more information or to register to vote, contact us at 1-800-834-7890 or visit us online, www.vtpa.org
Hospitals Moving Away From Shackles
Changes are happening in the way people with mental health issues are transported from hospital to hospital, gladdening the hearts of staff members at Vermont Protection & Advocacy.
According to VP&A executive director Ed Paquin, it has been basic policy around Vermont that when the state is involved, mental health transports between hospitals are done under contract with the sheriffs. “The sheriffs insist that, for a variety of reasons – liability among them, safety among them, they don’t transport without putting people in restraint.”
Merry Postemski of VP&A has long believed that people with mental health issues should be transported in the least restrictive and most respectful way possible – especially if the person is a child. So when she heard about a 7-year-old boy being transported in shackles and handcuffs from the Rutland Regional Medical Center to the Brattleboro Retreat, she spearheaded an investigation.
The child had been taken to the Rutland Regional Medical Center on Nov. 3, 2006, after what a Rutland Mental Health Services staffer called “extreme escalation at school.”
“The judgment was made there that he needed inpatient treatment and the logical place for it apparently was the Brattleboro Retreat. We don’t take issue with those judgments,” said Paquin. “The focus of our report was that the child had settled down and was transported in hard wrist and ankle shackles to the Brattleboro Retreat, which is probably a good hour and a half drive, in a sheriff’s vehicle.”
In its investigation, VP&A concluded that the use of “secure transport” (i.e., uniformed law enforcement using handcuffs and shackles) on “any emergency department patient requiring transport to inpatient psychiatric care is inappropriate and a violation of federal law.”
The Emergency Medical Treatment and Active Labor Act (EMTALA) requires appropriate medical transport if there is a reasonable likelihood that a material deterioration of a patient’s medical condition may result from or occur during transfer to a receiving hospital.
“So the issue here is that if the individual needs to be transported to another hospital for ostensibly medical reasons, it should be done by medical personnel,” said Paquin.
After VP&A presented its draft report to officials at Rutland Regional Medical Center, the hospital’s president responded stating he agreed that an alternative method of transporting involuntary patients must be found. The president went on to state that he was going to bring involved parties together (referring to the hospital, the sheriff’s department, the local ambulance service and the local mental health agency) to establish a better way.
Just a few weeks after receiving this letter dated Oct. 26, 2007, VP&A learned that a better way had indeed been found.
“What they decided to do and what they’ve implemented,” said Paquin, “are agreements with their ambulance service providers to transport people by ambulance. If they feel there’s some level of risk, they still will have a sheriff go along. They may very well have to do some kind of restraint . but it wouldn’t be, except in a very, very extreme case, steel handcuffs and shackles. So it’s a much more respectful approach.”
Adopting a different approach to hospital-to-hospital transports, said Paquin, has proven to be much less traumatizing to VP&A’s clients. And so far, he added, RRMC officials have said that transports to the state hospital under the new policy have gone well.
“So we are really pleased to have acted as a catalyst to get the Rutland Regional Medical Center to re-evaluate their approach to this,” said Paquin.
VP&A has been trying to act as a catalyst for change in state policy as well. One of the recommendations in the report states: “The Commissioner of the State of Vermont’s Department of Mental Health should immediately cease the dehumanizing and potentially traumatizing use of secure transport by law enforcement personnel on involuntary patients in the care and custody of the state who require hospital to hospital transfer for psychiatric evaluation and treatment.”
Given this recommendation, VP&A staffers are gratified by a significant policy change instituted recently by the Department of Mental Health.
A.J. Ruben, VP&A’s supervising attorney, explained that a few weeks ago, DMH Commissioner Michael Hartman issued a statement that it’s going to be the policy of the Department not to transport children age 10 and under with hard shackles and sheriffs.
“If people in the community wanted the Department to make that rule so that it applied to all folks who are having mental health crises or being transported, then they could call the commissioner and their legislators to urge them to make that rule apply to all mental health patients and not just children under 10,” said Ruben.
Paquin added that while there is pretty good law governing the transport of people with mental health issues, people expressing their concerns to the Legislature is always a good idea. “They certainly could contact Vermont Protection & Advocacy as well.”
Ruben and Paquin noted that RRMC is not the only hospital in the state doing hospital to hospital transfers of people with mental health issues in what VP&A considers to be the correct manner. Springfield Hospital’s Windham Center and the Southwest Medical Center in Bennington are also doing transports without handcuffs and law enforcement officers.
Also on the bright side, the Howard Center for Human Services and Washington County Mental Health are teaming up to buy a van for people experiencing mental health issues who need hospital-to-hospital transport. The van would be staffed by people with some mental health training, said Ruben. VP&A is hopeful that the success of this program, which will serve Washington, Chittenden, Franklin/Grand Isle and Addison counties, will be duplicated across the state, especially for children who need to be taken to the Brattleboro Retreat.
Paquin concluded, “(Transport in shackles) is really something that is so counter-productive and so much against any kind of orientation toward respect of the individual and respect for the individual’s recovery and their trauma histories, that we’re really pleased to see that this practice is starting to be phased out.”
Postemski is pleased as well, knowing that she personally had a hand in the evolution of a better transport system!
Possible changes to judicial proceedings involving involuntary medication are a cause for concern.
“It appears as though the Department wants to speed up the process so that involuntary medication can be done quicker than it has been done in the past and is currently done,” said Ed Paquin, executive director of Vermont Protection & Advocacy, an agency that works to advance the rights of people with mental health and disabilities issues.
According to Paquin, under current Vermont law a person with a mental health crisis can be held for an emergency evaluation. (This is sometimes called a 72-hour hold.) That triggers a process in which the person can be medicated on an emergency basis. The person is then evaluated and decides whether he or she wants to be voluntarily admitted to the hospital.
If the person doesn’t want to be voluntarily admitted, the state can file an application for involuntary treatment (AIT). The person is provided with certain due process rights including representation by an attorney and an independent evaluation. If the individual is found to have a mental illness and to be a danger to themselves or others, they can be committed. That process typically takes a month to 45 days, Paquin said.
Once someone has been committed, the state can file to involuntarily medicate the person on a non-emergency basis. The determining factors include whether the person has a mental illness, whether they oppose treatment, and whether they have capacity to make an informed decision. If the person is found not to have capacity and found to be mentally ill and to need treatment, the state can get a medication order. This determination is based on a consideration of such factors as the possible risks and benefits of treatment, the patient’s prognosis with and without treatment, and the patient’s religious beliefs.
If the person is found to oppose the medication but has the ability to make a decision and appreciate the consequences of the decision (that is, to have capacity), then he or she has the right to refuse treatment. The person may still be held if they’re considered to be a danger to themselves or to others. This process can take as little as 10 or 15 days, depending on factors such as whether attorneys for the individual ask for continuances and on when the court can hold hearings.
Paquin emphasized that since the process now occurs in family court, both sides have legal representation. People have some protections under law because there’s allowance made for independent evaluations of clients the state wants to medicate, said Paquin.
It appears the state is looking at folding the involuntary medication proceeding in with the same proceeding as involuntary commitment, said Paquin.
VP&A generally opposes involuntary treatment, Paquin said. “However, given the structure that we have now, at least there is a degree of due process afforded to individuals so that each of these issues – and they are separate issues – can be determined. By having the two processes occur one after the other, it tends to reduce the amount of applications for involuntary medication . We see some value in some time elapsing in order that the individual has more of a chance to understand their circumstance, to get what other treatment is available, and possibly to avoid the very traumatic issue of being forced into a chemical treatment.”
Paquin referred to Vermont’s Act 114, which passed in 1998, although parts of it were delayed in implementation because they were challenged in court. “Essentially a credible degree of due process was laid out in Vermont law and was made to be consistent with the values of working toward a minimum use of coercion. We believe that minimizing coercion is a good foundation to build your system on as is community services. We believe that to try to abbreviate a system that’s not really even been viably tested in the community is not good policy, and it’s a distraction from the type of policy that we should be working toward.”
Changing the law could mean speeding up the process by a few weeks, Paquin said. “However, it could also mean that you negatively affect a person’s relationship with their providers because you introduce a level of coercion that could affect their attitude toward the mental health system for years to come.”
Section 7629(a) of Title 18, Chapter 181, states, “It is the intention of the general assembly to recognize the right of a legally competent person to determine whether or not to accept medical treatment, including involuntary medication, absent an emergency or a determination that the person is incompetent and lacks the ability to make a decision and appreciate the consequences.”
Subsection c of the same chapter under Vermont law states, “It is the policy of the general assembly to work towards a mental health system that does not require coercion or the use of involuntary medication.”
Paquin said that Vermont has based its mental health system on a number of very good policy directions.
When Act 114 was enacted, it was envisioned that the judicial proceedings could occur for patients in community hospitals. “There’s no law that prevents this from being adopted and put into practice in the local hospitals. But, none of the hospitals have opted to do this, so today it only occurs at the Vermont State Hospital.”
Paquin said because of the movement to close the Vermont State Hospital, the issue of treatment at the community hospitals has resurfaced.
VP&A is hoping to help educate legislators on the basic values of the mental health system, with the goal of replacing the State Hospital in ways that are consistent with those values instead of, Paquin said, “relying on speeding up parts of the process essentially just to save money and time.” There are a number of modalities besides chemical treatment that should be available to a person with a mental health crisis, and VP&A believes the emphasis should be placed on these other modalities and especially on long-term community supports.
Paquin urged Vermonters with concerns about involuntary treatment to call or write their local legislators.
“I think it’s important for people to help their legislators understand that the civil rights issues here aren’t abstracts. They play themselves out in the relationships that people have with the system long term. In the long term, it’s good for people’s mental health to feel as though they have integrity as individuals, and that they have enough worth to at least have certain civil rights honored by the system.”
By K.K. Wilder
Is Pain Necessary?
Longtime registered nurse Gail Longley replies: “Pain has its place. It is oftentimes the first sign that something is wrong with the body. Initially, some of us ignore it or grab an over-the-counter pain pill, then go about our lives. But anyone who is in severe pain due to illness or injury needs attention.”
What kind of pain might that be? Injuries are obvious. If a skier rams into a chair lift and breaks his leg, the pain that results is instant and acute. He needs to get to an ER, have the leg set, and possibly have surgery to prevent further problems with the bones involved. In a case where pain isn’t coming from something that happened outside ourselves, it comes from inside. A perforated or burst appendix can bring sudden, intense pain. The message the nerves send to the brain in that case don’t tell us to stop doing something, but rather to start doing something. “Pay attention to me!” it cries. “Something’s wrong in my system; get it fixed!”
What About Chronic Pain?
But what about chronic pain? What about the pain that emanates from illness, from conditions that aren’t going away as soon as we stop doing whatever we’re doing? The pain that doesn’t stop when something in our body gets treated with surgery or other means that will heal within a period of time?
Perhaps you are thinking, “In that case, there are many effective prescription pain medicines these days. Why don’t such people just go to their doctors and get some?” Easier said than done. We all know one of the major reasons why doctors, even those in emergency wards, have become gun-shy in prescribing pain meds: drug addicts.
You can hear a voice in the room next to you at the Emergency Unit. He sounds young. You hear him telling the nurse he’s not sure how he cut his hand, but the pain is just awful. “But this doesn’t even require stitches,” the nurse tells him. “Do you know why you’re in so much pain?”
“I don’t know,” he says, his voice growing louder and more insistent. All he knows is he must have pain medicine – now – because his hand really, really hurts.
“Hmm. This almost looks like, well, like you did it on purpose,” says the nurse. “Just a moment. I’ll have a physician look at it.”
“To hell with you!” yells the patient as he bolts from his gurney and runs out of the unit.
In day-to-day life, many physicians, not just those in emergency rooms, fear recriminations for giving out pain medicine prescriptions, even for people who have certifiable chronic illnesses that generate accompanying pain and suffering.
“I don’t think docs are allowed to prescribe pain meds in the correct quantities,” says a retired office worker who experiences bouts of debilitating sciatic pain. “I have had times when I thought I needed pain meds in a stronger dose than my doctor has prescribed, but he wouldn’t increase them. I know there is such a problem with addiction today that the docs have to be careful, but I think in cases of true pain, they should be more free with the pain meds.”
Nurse Longley agrees. “I don’t want to see anyone overdose on pain medicine, but neither am I of the old school that says, ‘If I give her too much medication for pain, she’ll become addicted.’ Pain can be controlled so a person can enjoy their life and their world, whatever that means to them. Studies have shown that addiction in these circumstances is most often non-existent. Chronic, life-changing, debilitating pain is not necessary today.”
Does Pain Build Character?
There is a famous phrase from well-known German philosopher Friedrich Nietzsche’s 1890s book, “Thus Spake Zarathustra.” “That which does not kill me, makes me stronger.” Really?
A friend of mine reacts. “I’ve heard all the talk about how pain and suffering build character,” he says, “but I believe pain seriously damages the quality of life. Couple that with the reluctance of the medical establishment to prescribe pain medications, and you get a subculture of people where pain becomes the overriding factor in their daily lives. In short,” he concludes, “pain sucks. And nobody who hasn’t been there really understands what you are going through.”
Such lack of understanding is something a former electronics technician knows all about. He has suffered from disabling cervical spine pain for a long time and had to leave his job just a few years before he could have retired with full benefits. It sometimes gets him down. “Pain leads to depression and depression leads to pain,” he says. “There are studies that give medical people all sorts of ‘facts,’ but the depression doctor thinks one way and the pain doctor another. And they don’t seem to communicate with each other about the patient, so when all else fails, one sends you to a physical therapist and the other to a talk therapist.”
“Physical therapy can be very helpful in some cases,” nurse Longley says. “And totally useless in others. I have an 85-year-old patient who was a professional dancer in her younger years. She is in constant pain in her back and spine. The docs push mostly opiates on her, but she says they make her feel sick and ‘out of it.’ She recently went to a pain clinic and was given impossible physical exercises to do. Mind you, she can hardly walk across the room. She’s very discouraged. This is no way to live out the last years of her life.”
The good news is, health workers are trying hard these days to not only understand, but also to do something about chronic pain. They no longer just throw their hands in the air, shrug, and play “pass the buck” with such patients.
Seeking Help from Pain Centers
Dr. Brian Erickson is on the staff of the Center for Pain Medicine, part of Fletcher Allen Health Care of Vermont. In his work, he often deals with people in chronic pain. “That’s pain lasting more than six months that hasn’t responded to healing,” he explains. “When longtime pain affects work, social activities, mood, and has a great impact on a patient’s life, we try to find ways to help.” Dr. Erickson is a psychiatrist.
Are we back to “the pain is all in your head” routine? “Not at all,” Dr. Erickson says. “If the pain medicine prescribed by a patient’s physician isn’t working, they are often referred here for help. And when I see a patient for evaluation, I come from a bio-psycho-social-spiritual approach. I look at what might be involved for the particular patient: predisposing factors, precipitating factors, perpetuating factors, and protective factors. I learn how they got here and we work on developing an individual treatment plan. We have a variety of ways of treating pain,” he adds. “Through our five anesthesiologists, a nurse practitioner, and me, there are a range of interventions. And that’s just at our particular pain center. There are others located throughout the state.”
Such interventions can be in the biologic realm: anesthetics, epidural injections, trigger point injections, or medications. Methods range from injections and treatments to active or passive physical therapy, including cranial-sacral methods, postural restructuring, and Transcutaneous Electrical Nerve Stimulation (TENS Units). Medications can include opioids, narcotics, even anti-depressants. “People who have chronic pain sometimes develop depressive/anxiety disorders,” explains Dr. Erickson. “And some people have emotional systems that develop physical conditions resulting in pain.”
“It Was Almost Miraculous!”
So where do people in chronic pain start? Finding out what exists for pain treatment is a good place. An example of this came when Mabel Smith learned about vertebroplasty. “I didn’t even know it existed,” she says. “I’m very old, have osteoporosis like so many women, and had a compression fracture in my spine. I was in horrible pain and none of the medicines helped. Then my primary care doctor told me about vertebroplasty.”
Vertebroplasty is performed by a radiologist without surgery and involves inserting a glue-like material into the center of the collapsed spinal vertebra in order to stabilize and strengthen the crushed bone. The glue (methylmethacrylate) is inserted with a needle and syringe through anesthetized skin into the vertebra under the guidance of specialized X-ray equipment. The glue soon hardens, forming a cast-like structure with the broken bone. Relief of pain comes quickly and the newly hardened vertebra are then protected from further collapse. “My pain stopped right off,” says Smith. “It was almost miraculous! It changed my whole life.”
Don’t Give Up
According to Dr. Erickson, some people find relief through the treatments we’ve mentioned. They also obtain assistance through biofeedback, naturopathic medicine, or acupuncture. He tells us the American Pain Society provides members with newsletters, information, resources, different modalities, and education.
“We can’t promise all chronic pain can be eliminated,” he says, “but we try to help patients function better and avoid the condition of suffering. New methods are always being developed. Even though I or someone else at a pain treatment center might have used all the tricks available to them at one time, come back again and maybe more will have been learned by then. Just don’t give up.”
(K.K. Wilder is a columnist and educator. Reach her through The Independent or e-mail KKWilder@aol.com.)
Integrated Treatment Workgroup
For a long time, there has been a great need to develop a comprehensive approach to professional and consumer chronic disease management. Since arthritis with its 100-plus variations is both the most prevalent chronic disease and the one in which consumers have the highest utilization of alternative therapies and supplements, the Vermont Health Department’s Arthritis Program and the Vermont Arthritis Coalition undertook the task of developing an integrated approach to the diagnosis and treatment of arthritis. Patients indicated that they did not tell their conventional practitioners about their use of supplements and alternative therapies to manage pain and improve daily functioning because they believed their providers would disapprove.
In June of 2005, a new state coalition workgroup, the Integrated Treatment Workgroup, was established. It currently has 36 professional members including representatives from primary care; rheumatology, orthopedics (hospital), physical therapists, occupational therapists, and specialists – such as a sleep specialist, TMJ and oral pain specialist. Alternative practitioners include chiropractors, naturopathic physicians; osteopathic physicians, acupuncture and Oriental medicine practitioners, and massage therapists.
The use of an organized, integrated approach to the treatment and management of arthritis is expected to improve patient care through practitioner collaboration and to give patients a clear role in determining the individualized assessment and treatment best suited to their individual medical needs and interests.
For information contact Jean McCandless, MSW, Arthritis Program Manager, Vermont Department of Health, 802-951-4068, firstname.lastname@example.org
VCIL is sponsoring “Building Barrier-Free Environments, A Conference on Universal Design,” 8 a.m. April 24 at the DoubleTree Hotel in South Burlington. For more information, contact Joyce at 1-800-639-1522.
“The Rosa Lee Show” will take place at 7 p.m. Saturday, May 17, at the Austine School for the Deaf in Brattleboro. There will be an interpreter at the show to interpret for the hearing audience. Adults, $10. Children ages 4-12, $5. For more information, e-mail email@example.com or call 1-800-639-1519.
Join parents, policy-makers, youths, professionals and educators at daylong conference, “Charting the Course,” at the Killington Grand Hotel, June 4, from 8 a.m. to 3:30 p.m. Keynote speaker will be Scott Chesney, a well-known motivational speaker and individual with a disability. Contact the Vermont Parent Information Center to register at 1-800-639-7170, or via e-mail, firstname.lastname@example.org
“Charting the Course” is co-presented by the Vermont Parent Information Center and Parent to Parent of Vermont.
|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 DEADLINESubmissions must be received by June 16, 2008|