Volume 14, Number 3
A Vermont publication for elders and people with disabilities
Table of contents:
- Introduction from Deborah-Lisi-Baker
- Program Funds Adapted Telephone Equipment
- What Is Community Worth And What Is It All About, Anyway?
- Food Resources
- VCIL Voices
- Are You Prepared For The Next Emergency?
- PAC Gives Peers In The NEK A Reason To Celebrate
- Chicago, The Experience
- Thank You, VHCB!
- Video Phones Provide Another Opportunity for the Deaf Community
- For Joey Klein on His Birthday
- Looking For Accessible Recreation And Sports Opportunities Or A Workshop On Wellness For People With Disabilities?
- Second Spring
- Second Spring´s Promise
- Reflections On The Community Recovery Residence (CRR) In Williamstown
- Assistive Technology
- Living Well – check out the VCIL ReCycle catalog for used independent living equipment.
- Disability Happens
- Bulletin Board
- Two Disability Organizations Merge
- VCIL Invites You to Celebrate the 17th Year of the Americans with Disabilities Act
Springing Into Summer
Welcome to our Spring/Summer ’07 issue! This is the time of year when we share legislative news from the Community of Vermont Elders (COVE) and the Vermont Coalition for Disability Rights (VCDR). Our thanks to their staff, the many volunteers who testified at the Statehouse this year, and the legislators who heard these concerns and supported legislation and funding for older Vermonters and Vermonters with disabilities. The COVE and VCDR summaries highlight important issues, but these are only some of the things that were being debated and worked on under the Golden Dome in Montpelier. The work our citizen Legislature does is pretty staggering.
We have included a broad range of stories and news items in this issue. We welcome your comments and response to what we have shared. We also wanted to share some news about The Independent. Starting in July, this issue and future issues of The Independent will also be found on the VCIL Web site. We hope this makes it easier for other readers to find this publication. We also wanted to let readers know that post office charges for small publications like this have gone up significantly. You can help us with mailing costs by letting us know if your address is correct. Contributions are also very much needed and greatly appreciated. Our fall issue goes to the press in mid-September. We look forward to hearing from you!
– Deborah Lisi-Baker, Editor
We would like to let you know about a valuable program, the Vermont Telecommunications Equipment Distribution Program (VTEDP), which is funded by the state of Vermont. VTEDP provides Vermonters who are not able to use a regular telephone because of a hearing loss, speech-impairment or other physical constraint, and who qualify because of their income, with free adaptive telephone equipment to enhance communication in their lives.
We continue to search for individuals who, because of a disability, have trouble using a regular telephone, such as people who are deaf, hard-of-hearing, late-deafened, Deaf-blind, speech-impaired or have some other disability.
We would greatly appreciate your assistance in referring your clients or other individuals who might benefit from our program to us. Each person’s needs are unique and there is a wide range of adaptive equipment available. If you have any questions, please don’t hesitate to contact us. We’re happy to explain how the program works and what equipment might help your client, family member, or friend.
Please contact us if you would like to receive our brochures, and we will be happy to send them to you. Information about, and applications for, the VTEDP are available from our Web page: http://www.vtedp.org.
If you ever wanted to help someone you knew needed assistance in using the phone, now you can. There are funds available for free equipment to those who qualify based on their income.
Thank you for your assistance and if you have any further questions or require assistance regarding the application process, please contact us. René Pellerin: rpellerin at vcdhh.org or Jorika Stockwell: jstockwell at vcdhh.org. We can also be reached toll free at 1-888-254-3323 (Voice/TTY).
by Deborah Lisi-Baker
“If I am not for myself, who will be for me?
If I am only for myself, what am I?
And if not now, when?”
Amidst the busyness of my life, sometimes the natural world or a glance or conversation with someone will remind me to step back and look at the world differently. Two mornings ago my husband called me to the window to watch a tiny fawn and its mother sheltering in the tall grasses next to the woods. Coming up the driveway a few minutes later my driver saw a black bear ambling across the driveway where it curved toward the house. These two glimpses of life in its wild beauty reminded me, yet again, how interconnected we all are, how extraordinary life is and how our choices and actions reverberate, in ways we seldom imagine. The deer and the bear went on their respective paths into the wood and I grabbed my backpack and headed down the ramp toward meetings. My experience of the day was reshaped by these morning visitations.
Two years ago I was an observer at a meeting of the United Nations committee brought together to develop a new U.N. charter on international disability rights. Delegates with disabilities from across the globe were there and they talked about many things that are concerns of Vermonters with disabilities and many older Vermonters: food, transportation, access to medical care that includes resources that make independence possible, and the end of discrimination. They talked about these things in stark terms and in ways that told me how much many Americans can take for granted. A woman delegate from an African nation said that the document must ensure that equal rights to the most basic resources are not overlooked. She mentioned that people with disabilities have no assurance that they will have access to the limited food and clean water in their communities.
Her words reminded me of what VCIL founders said 27 years ago, “Independent living is not something we can take for granted.” This is still true for many here in Vermont and around the world. Like other members of the National Council of Independent Living, I am sad and angry that the leadership of this country chose not to be present at the United Nations in April of this year, when governments from around the world came to recognize and support the principles and goals of a declaration of the international recognition of disability rights. As our soldiers come home with disabilities, as wars and poverty leave people disabled around the world, we should be speaking up for equal rights for persons with disabilities and helping people get the resources that make independence, work, and community participation possible.
People with disabilities and other advocates for disability rights from many other countries have visited or contacted VCIL over the last eight years. Our disability rights laws and services amaze our visitors. What often inspires us is their individual and shared decision (sometimes despite seemingly insurmountable odds) to create new resources and possibilities for children and adults with disabilities in spite of the difficulties. They come together to help each other and to fight for rights and create services that some Americans either take for granted or have given up on. It is not that Americans, and Vermonters, don’t help one another; we do. Sometimes, though, we seem to lose the awareness of how fragile life is; and yet, of how powerful we can be when we choose to reach out and come together to make something happen, to be there for each other. In this recognition, it is easy to find common ground. An Iraqi woman (living amidst war while working on human rights, environmental protections and social justice issues) came up to me after a meeting in our Montpelier office. Dressed in her black burqa, she took my hands, looked deep in my eyes, thanked me and then said, “We are all, really, of one faith.”
Today, in Vermont and across the country, we worry about taxes, about not having enough to pay our bills or save for our future or for our children’s education. We are sad, angry and frightened about what war is doing to our nation, to those who serve and their families. It is horrifying, too, to see what war is doing to the lives of so many people living in areas of the world where it is normal to live with daily fear of bombings, land mines, threats. Many, here and around the world, live in isolated poverty or experience the poverty of isolation.
Yet people are reaching out in community and the power to change the world makes itself apparent. A young filmmaker in India films the peer support organization that is helping earthquake victims find life and work after disability. Mobility without Barriers, a small Vermont-based organization, is creating new kinds of mobility aids and opportunities for cooperatives for young people with disabilities in Ethiopia and India. Citizen advocates are transforming public policy relating to aging and disability and are changing what we expect of programs for older Americans and individuals with disabilities and their families. Recovery advocates are transforming mental health services in Vermont and across the nation and self-advocacy groups and parent organizations across Vermont and throughout the world are working alongside one another and with architects, aid organizations, local and national governments and neighborhoods to change the meaning of both aging and disability.
Positive change takes individual and shared action. I want to find creative and community-centered ways for us to work together in our personal and organizational work for social justice. At the same time, in a time when there is a call to reduce taxes and mistrust government, I want to speak for the value of government and taxes when the resources they generate are developed and used to promote equal rights, mutual respect, shared responsibility and the common good. It makes sense to share resources through taxes to lessen poverty, make communities accessible, protect the environment, fund health care and education, end hunger, and build affordable housing and transportation that benefits people across the lifespan. The power to create a better tomorrow grows even more powerful when we reach for it together. Let’s invest in one another and our shared lives. We do not inhabit this world alone.
Deborah Lisi-Baker is the executive director of the Vermont Center for Independent Living (VCIL) and editor of The Independent. For information about the U.N. Convention, the international groups mentioned in this column, or on ways you can advocate for international services or for national funding for independent living, check VCIL’s Web site (www.vcil.org) or contact Deborah at VCIL.
by Michael Sirotkin
- Choices for Care Waiver (H.537, sec,112(a)) – When Choices for Care was established more than a year and a half ago, the promise made was that any savings from reduced nursing home costs and other cost reductions were to be reinvested back into more and/or improved home and community-based waiver services.
COVE and other advocacy groups strongly feel that this promise was broken in that $4.5 million of these savings were diverted this past year to meet unrelated budget pressures. Therefore, we worked hard this session and were successful in enacting a new statutory commitment that: 1) There would be no new applicants wait listed for CFC services in 2007 and 2) that the commissioner of the Department of Disability, Aging and Independent Living would make any future “savings” and “reinvestment” calculations/policy more transparent, so this dispute will hopefully not resurface in future years.
The new statutory language we achieved is very good for the future of long-term care services. It will effectively assure that all future monies appropriated under Vermont’s CFC long-term care waiver which remain unspent in any given year cannot be raided for other purposes, and will only be used for long-term care services. Furthermore, the monies can be used for a wider range of long-term services than just those covered under the CFC waiver, which heretofore did have a limiting effect on spending flexibility.
Finally, it is important to note that the CFC appropriation approved by the Legislature for ’08 is very healthy indeed. We believe, based on conversations with the administration, there is sufficient funding to avoid any recurrence of CFC waiting lists anytime during the next fiscal year, and hopefully beyond.
- Fuel Assistance; Raising the Asset Eligibility Test (H. 537, sec.142a) — Vermont has historically had very healthy fuel assistance benefits which now are designed to cover approximately 62% of a low-income senior’s bill. On the other hand, we have among the tightest eligibility levels in the country — limiting access to those with incomes below 125% of poverty and who have virtually no liquid assets ($3,000). No state in New England has an asset test anywhere near this low, and the $3,000 figure has not even been adjusted for inflation in approximately 25 years.
The result is that many low-income seniors, struggling to pay their fuel bills, and who have very small accounts saved for an emergency or for their final days or burial, cannot get any heating help whatsoever.
Many VT programs including telephone lifeline, pharmacy, and even the newly established Catamount health care program (with an income threshold of 300% of poverty) do not have asset tests. COVE feels the time has come to raise or eliminate the asset/resource test for fuel assistance.
While congressional delegations from northern tier states continue to push for at least level LIHEAP funding ($5.1 billion) out of Washington, as of now our sources say they are not hopeful. Thus, the likely impending cut in federal fuel assistance monies made our hoped-for asset eligibility expansion far more challenging.
Nevertheless, the Legislature did approve raising the eligibility test from $3,000 to $5,000, which admittedly is far less than we had hoped (only a few hundred more households will gain eligibility). However, we were successful in adding language to the budget requiring the Agency of Human Services to study the possibilities and ramifications of raising the asset test further next year and beyond. So additional increases will be on the table for further discussion, once the study is finished next January.
- Medicaid ’08 Budget — Just a few short years ago the administration was sounding the alarm of a $500 million deficit in Vermont’s Medicaid program by 2010. The new Global Commitment Medicaid Waiver, which allows the state to draw down federal funds on previously state only funded programs (e.g. homemaker services), coupled with decreased caseloads for people seeking Medicaid, have brought projected Medicaid deficits down to manageable levels. Indeed the final FY’08 had no proposed benefit cuts in Medicaid and indeed has some provider increases such as for dentists, hospitals, doctors, nursing homes, community-based LTC providers and will restore chiropractic service in FY ’09.
- Aid to the Aged Blind and Disabled (AABD) — The state of Vermont supplements with state dollars (around $60/month) the Supplementary Security Income (SSI) check that our poorest Vermonters receive as their basic monthly living allowance. Each year the SSI portion of the check (around $550/month) receives a cost of living adjustment (COLA) based upon inflation. The governor’s 2008 budget, as have several past budget proposals, sought to effectively deny these seniors and the disabled a portion of their SSI COLA , by reducing the amount of their AABD state supplement — a $200K cut overall. We opposed this and the Legislature restored the cut.
- Direct Care Workers Registry (H.537, sec.274(a) (3)) — A voluntary Internet-based registry of direct care workers was proposed by COVE with the help of the Better Jobs Better Care grant, and was included in the interim recommendations of the legislatively established direct care worker study committee.
Access to the registry would be free to those looking to hire a direct care worker. A question still to be decided is whether background checks will be provided for those on the registry and who will pay for those checks.
The registry would be developed by an independent contractor who has experience in implementing such registries in other states, and was projected to require startup costs of $100K from the state budget. In subsequent years ongoing funding should be less than $40K per year.
For more information contact COVE at 1-888-865-2683 or visit their Web site, www.vermontelders.org
by Alicia Weiss
- H.526 Education Quality and Cost-Control: General education costs will be controlled by a cap. High spending districts can only exceed the cap via a two-step process, in which the cap is overridden by a second vote. Critics of the 11th-hour agreement object that legislators had little time to consider the bill and school budget growth is affected by factors over which districts have little control.
Special education costs will be monitored via annual review by Department of Education (DOE), to identify high and low spending districts. Districts that cannot justify high spending must develop a remediation plan. If the commissioner determines satisfactory progress is not made after two years, 10 percent of the district’s special education expenditures reimbursement will be withheld in the ensuing school year. Another 10 percent can be withheld each year if DOE judges satisfactory progress is not achieved.
We are concerned for a number of reasons. (a) Support by a panel of experts to high-spending districts in the original version of the bill was removed. (b) There is nothing to ensure pressure to reduce special education costs does not result in less efficacious services. (c) Low spending districts are reviewed as possible models for other districts, but not to verify whether they meet all requirements of the Individuals with Disabilities Education Act. (d) Withholding of federal funding will require compensation by state funding. This may further exacerbate public perception of special education as the primary “drain” upon the property tax and increase pressures to cut corners in this area.
A study will examine how the Agency of Human Services, DOE and the Department of Employment & Training should provide special education services and other human services-related services for elementary and secondary students. The Vermont Parent Information Center and VCDR are named among participants in this study, to be submitted by Nov. 1, 2007. Additional charges include a study on Medicaid-funded educational services and a report on fiscal requirements of state and federal mandates.
- H.534 Prekindergarten Education: The bill outlines a process for establishing voluntary pre-K programs through public schools, a formula to determine the number of children counted toward the school’s average daily attendance (ADM), and places a limit on the number of ADM placements that qualify for state funding. Of importance to disability advocates, the bill does not compromise inclusion by limiting pre-K programs to “at-risk” children, as proposed last year. It specifies that all children receiving early essential services can be included in the ADM count. A study to be performed by DOE and the Department of Children & Families (DCF) on the impact of the program is due by Jan. 1, 2010.
DEVELOPMENTAL SERVICES & MENTAL HEALTH
- H.274 Adult Foster Care: The bill establishes equitable treatment of providers of child and adult foster care with respect to the homestead tax. Last year’s legislation would have put a $6,500 cap on the exemption in 2008 taxes. The bill re-establishes and formalizes what has been practice over the years. The governor let the bill become law without his signature, but also indicated the administration hopes to reverse the decision.
- S.121 Relating to Autism Spectrum Disorders (ASD): AHS and DOE will develop a plan for a coordinated, lifelong system of care to address the needs of Vermonters with ASD. An important strength is the range of stakeholders with which AHS and DOE are instructed to collaborate on the plan. People with ASD and their families are to be represented across regions, diagnosis and severity of symptoms. Representation by family support organizations and professionals with established expertise in ASD is also specified. We appreciate the hard work of House and Senate Education Committee members and the unceasing advocacy of parents. The written plan is due to be presented to the governor and Legislature by Jan. 15, 2008.
- H:449 Transitional Youth: The first section of this bill extends supports to youth from 18 to 22 years aging out of foster care or who have recently left foster care. This will be beneficial to youth with disabilities in foster care who fall through the cracks for eligibility for Medicaid and other services. Participating youth are required to be employed or attend an educational or vocational program; youth with disabilities are exempted from this requirement.
The bill also provides that there shall be no Medicaid prescription co-payments for young adults from age 18 to age 21.
Additionally, the bill charges the Secretary of Administration, in consultation with AHS, the Department of Labor, the Department of Disabilities, Aging & Independent Living, the Department of Corrections, the Department for Children and Families, and DOE to study costs and benefits of providing transitional services to a youth up to 22 years who (a) has a functional developmental disability and has been receiving state-funded services or services under an individualized education program on or before the youth’s 18th birthday; or (b) has been receiving state-funded services for severe emotional disturbance on or before his or her 18th birthday. Input from consumers, providers and representatives of disability advocacy organizations is to be summarized in the report, including the VT Developmental Disabilities Council, the VT Federation of Families for Children’s Mental Health, and VCDR. Special thanks to members of the House Human Services Committee for their thoughtful work and persistent commitment to the needs of youth with disabilities.
Initiatives not included in the bill were documented in a letter to the Secretary of AHS, calling for a comprehensive examination of the needs of the transition-age population. Among gaps cited in the letter are services to youth who meet a functional, but not categorical, definition of developmental disability and to youth with severe emotional disturbance who do not meet clinical eligibility criteria for youth for adult CRT services.
- H.137 Restoration of a Department of Mental Health and Commissioner of Mental Health: The bill establishes a Department of Mental Health and Mental Health commissioner. The department will be responsible for the Vermont State Hospital (VSH) and all other areas of children’s and adults’ mental health. Integration and coordination with the VT Department of Health (DVH) will be maintained and further developed under the new department.
- S.124 Planning and Evaluating Options for Inpatient Psychiatric Hospital Services (Vermont State Hospital): Concerns about progress and the extent to which options for replacing VSH have been adequately analyzed prompted appropriation of $100,000 for independent evaluation of the state’s plan and alternatives, and the possibility of regaining certification and federal funding. A preliminary progress report is due by Sept. 1, 2007 and final report by Nov. 1, 2007. The governor allowed the bill to be enacted into law without his signature.
- S.128 Repeal of Sunset for Forensic Examinations at Designated Hospitals: A July 1, 2007, sunset for forensic evaluations at designated hospitals was repealed; assessments will continue to be performed at facilities across Vermont, and require that an individual be demonstrated to need treatment by a mental health professional and defendants who are not ordered to return to court or not in custody of the Department of Corrections be returned to the community.
- S.97 Correctional Facilities: A section that challenged the jurisdiction of the Human Rights Commission to investigate complaints of violation of Vermont’s Public Accommodations Act was eliminated as the result of coordinated advocacy. Other parts of the bill direct attention to the needs of inmates with severe mental illness (SMI) and the possibility of broadening the SMI definition to extend superior protections to other groups with disabilities that similarly impact cognitive and behavioral function. The report is due on or before Jan. 15, 2008.
- S.7 Compassionate Use of Marijuana for Medical Purposes (Medical marijuana): The bill allows a greater range of seriously ill Vermonters to register to grow marijuana for relief of a disease, condition, or treatment that is chronic, debilitating, and produces severe, persistent and one or more intractable symptoms. It increases the allowable number of plants for personal use and lowers the annual registration fee. The governor has allowed the bill to become enacted into law without his signature.
- H.44 Patient Choice and Control at End of Life (Physician-assisted Death): In what was a surprising outcome to many, the House defeated a bill to allow physicians to prescribe a lethal dose of medication if requested by terminally ill patients with less than six months to live. As the bill was emotionally debated on the floor, an increasing number of legislators concluded that there were just too many unanswered questions to enact a law of such monumental significance and with irreversible consequences.
- S.115 Increasing Transparency of Prescription Drug Pricing and Information: The Office of Vermont Health Access (OVHA) will maintain a pharmacy best practices and cost control program, including an evidence-based preferred drug list, a utilization review board, and strategies for negotiating with pharmaceutical manufacturers to lower the cost of prescription drugs. A joint pharmaceuticals purchasing consortium will be offered on a voluntary basis to private insurers, with mandatory participation by state or publicly funded health programs by Jan. 1, 2008. It is not known what action the governor will take.
- H.531 An Act Relating to Ensuring Success in Health Care Reform and H.229 An Act Relating to Corrections and Clarifications to the Health Care Affordability Act of 2006 and Related Legislation: Coverage for Catamount and VHAP will be retroactive to the date of application rather than beginning on the date the application is processed. H.531 charges the commissioner of the Department for Children and Families with studying costs and benefits of providing similar date-of-application eligibility for beneficiaries of state-funded pharmacy programs. H.531 also sets goals for coordinating outreach activities to people eligible for Catamount and VT public health care programs.
- H.523 An Act Related to Moving Families out of Poverty: Vermont’s Temporary Assistance to Needy Families (TANF/Reach Up) program provides benefits to very low-income families with children. Per federal law, the bill increases the number of Reach Up participants engaged in work activities. It also maintains state-funded programs that do not meet federal funding requirements.
Of interest to parents with disabilities or parents of children with disabilities, H.523 creates Reach First, a new program that serves families when they initially apply for benefits to give assistance for up to 120 days. Reach First: a) emphasizes giving families orientation to available services and in-depth assessment of service needs before development of a family development plan and b) allows the state to set up state-funded programs that do not use federal TANF money for vulnerable groups, including families in which the parents have disabilities; families in which one or more child has a disability and in which a family member is considered a work-eligible individual; and families in which the parents or caretakers have an application pending for Supplemental Security Income.
- H.527 The State’s Transportation Program: The bill adds $156,800 state and $43,200 federal one-time funds to the public transit Elders and Persons With Disabilities Program (E&D), for critical care transportation services not covered by Medicaid. Funds will be held in reserve by the Agency of Transportation and released only if shortfall occurs as a result of unanticipated need for critical care services. A study committee will develop recommendations for program stability and funding predictability. We appreciate the Legislature’s responsiveness to need in this area, but are concerned that original objectives of the E&D Transportation Program have not received explicit attention; these have often been sacrificed to meet the demand for critical care transportation not covered by Medicaid.
- Sick Building Hazards: The commissioner of the Department of Buildings and General Services and the commissioner of the Department of Health will develop a protocol for identifying and addressing current and potential health hazards in state office buildings, due Jan. 15, 2008.
- Catamount Health Assistance; Global Commitment Waiver: Based upon response from the Centers for Medicare and Medicaid Services by July 31, 2007, the Commission on Health Care Reform may recommend to: a) proceed with all or some programs associated with Catamount Health, b) delay some or all programs, suspend new enrollment, or c) restrict eligibility to a lower income.
- Chiropractic Coverage: As of July 1, 2008, chiropractic coverage for adult beneficiaries in Medicaid and VHAP programs will be reinstated with rates comparable to payments to other health care providers.
- Dental: Most enacted dental initiatives are advantageous for consumers. However, an increase in provider rates was enacted without a simultaneous increase in the cap on the benefits adults on Medicaid receive. Thus, adults on Medicaid will now be eligible for fewer procedures/services per year.
- New Grievance and Appeal Rules for Global Commitment and Choices for Care: The Legislature will monitor implementation of rules, the number and types of grievances, internal appeals, appeals to the human services board, and the number of internal appeals that were reversed by an independent decision-maker.
- Choices for Care (CFC) Long-Term Care Waiver: Last year’s Appropriations bill instructed that savings due to the implementation of the CFC waiver be reinvested in home- and community-based services. Advocates objected when AHS announced the transfer of approximately $1.8M in state funds to other areas of the budget in the Budget Adjustment Bill of FY’07. OVHA contended this was not savings, but an overestimate in the program’s first year budget. Advocates countered that a portion of this “overage” resulted from keeping about 90 people on the waiting list for months, trimming services, and failure to invest in services consistent with the intention of the waiver. While the Legislature ultimately approved the transfer of funds, it sought to clarify what constitutes savings, ensure people are moved from the waiting list on a timely basis, and protect demonstrated savings against future diversion.DAIL will submit quarterly reports about utilization of services and expenses under CFC and a plan articulating the method for determining savings, how the savings will be reinvested, and numbers of people receiving each category of service. Unspent appropriated funds shall be carried over to the next fiscal year.
- Aid to the Aged, Blind and Disabled (AABD): Due to work of advocates, this is happily a “non-issue.” The governor’s budget included a cut to the Supplementary Security Income (SSI) annual cost of living adjustment to people with disabilities and seniors as part of their monthly payment. This would have pushed vulnerable Vermonters further into poverty; the Appropriations Committees rejected the cut.
- Substance Abuse & Co-occurring Disorders: VDH will convene a task force to identify current substance abuse treatment services and how they may be integrated for a community- and recovery-based system Jan. 15, 2008. In response to inadequate FY’07 funding to programs for youth with co-occurring disorders, VDH will ensure full funding for mental health and substance abuse services for eligible children, youth and adults, and CRT program participants. A report to the Legislature in January will identify spending to date and assess adequacy of funding to complete the fiscal year.
- Success Beyond Six: AHS and DOE will convene a summer study to the impact of fiscal caps under the Global Commitment upon Success Beyond Six, which has provided a means of funding school-based community mental health services through Medicaid billing.
- Developmental Services, Mental Health & Substance Abuse funding: This is the final year of a three-year administrative commitment to a 7.5% increase to the areas of Developmental Services, Mental Health, and Substance Abuse. As a result of a careful and cooperative process that maximized use of available resources, projected caseloads were covered and an increase given to providers. Special thanks to Commissioner of Finance Jim Reardon.
- Mental Health: An Advisory Council for Mental Health Services Transformation replaces the current Futures Advisory Committee and broadens the scope to include all mental health programs, services, and supports. Representation will include consumers and family members. A July 1, 2009, sunset is identified.Total appropriations in the VDH budget for the Vermont State Hospital in FY ’08 are $20,861,837.
- Traumatic Brain Injury Study Committee: This study will include assessment of need for support by Vermonters affected by traumatic brain injury, stroke and substance-induced brain injury and analysis of insurance coverage for these conditions. VCDR applauds this initiative, but notes representation by advocacy groups and consumers is absent. We urge the study committee to invite full participation by these stakeholders. The report is due by Dec. 15, 2007.
- Home Access Program (HAP): DAIL, in cooperation with the Vermont Center for Independent Living, will report on the number of people with physical disabilities at significant risk of, or living in, nursing homes and other inappropriate settings, and the degree to which additional funding to HAP would allow individuals to live in the most integrated setting possible. HAP has been demonstrably under-funded for a number of years. As of January there was a three-year waiting list of 195 people; the cost of eliminating that waiting list was estimated at $1.5M. The report is due on Jan. 15, 2008.
- One-time Funding:
- DAIL received $60,000 to establish a Caregiver Registry.
- DOE received $400,000 to transfer to the DOC for its special education program.
For more information contact VCDR at 1-802-223-6140 or www.vcdr.org
Not Just For Children
(Both Area Agencies on Aging and VCIL operate Meals on Wheels Programs to help Vermonters who need help with food preparation have home-delivered meals. We often get calls about other programs that prevent hunger and support healthy eating. I recently visited a Web site that does a great job putting people and food together to eliminate hunger. This is just a sampling of the information that the Vermont Project to End Childhood Hunger offers on their innovative Web site. We have profiled some of their senior and disability information because so many Vermonters have a hard time accessing Web information. However, advocates at VCIL, Area Agencies on Aging and Community Action Agencies can also help you access the information. — DLB)
The Vermont Project to End Childhood Hunger wants to make sure that no Vermonter goes hungry. Their Web site (http://www.vermontfoodhelp.org) helps people of all ages find Vermont programs that deliver meals, distribute bulk food and commodities, and assist people in accessing funding services such as the national food stamp program. It also provides information on other useful services. These programs are available to many Vermonters, including seniors, individuals with disabilities, low-income families and children. The staff and volunteers who set up the Web site tell us that thousands of Vermonters who can get food stamps don´t know it. This Web site is designed to help Vermonters learn more about which food programs are available and how to find services you need. For example, did you know that the food stamp program has changed to make it easier for seniors and individuals on several disability benefit programs to use the program? In addition, food stamps and other food distribution programs help American farmers get both their local produce and national products to Vermonters. The following resources and tips come from this helpful Web site though we have changed a few of the headings.
Food Stamps For Older Vermonters And Individuals On Disability Income Programs
- You can have money in the bank. You can have up to $3,000 in the bank and still get food stamps.
- You can get more food stamps each month if you receive fuel assistance. If you get fuel assistance, you can get more food stamps each month. Even if you live in subsidized housing or your heat is included in your rent, you may be able to get fuel assistance.
- You can get food stamps without going to the food stamp office. If you cannot get to the food stamp office and do not have a friend or family member who can go for you, you can talk to a worker on the phone or at your home instead of going to the food stamp office.
- Your food stamps can be deposited into a bank account. If everyone in your food stamp household is 65 or older or disabled, you do not have to use the food stamp card. Instead, you can get food stamps in the form of cash deposited right into your bank account. You can use cash or a check to buy food. If you do not have a bank account, you can get food stamps in the form of cash on the food stamp card.
- You can get more food stamps if you have monthly medical expenses. You may be able to get more food stamps each month if you have medical costs not covered by insurance. These costs will be deducted from your income and can help you get more food stamps. Medical costs are things like: over-the-counter medications, insurance premiums, medical supplies, dentures, prescriptions and a home health aide.
- You can get food stamps if you own a car and your home. You can own a car of any value and own your home and the land you live on and still get food stamps. These things will not be taken away from you if you apply for food stamps.
- You can save money in a PASS plan and get food stamps. If you get SSI and have a PASS plan, the money you save in your PASS plan does not count against you when you apply for food stamps.
- You do not have to reapply for food stamps as often as other people. If everyone in your food stamp household is 65 or older or has a disability, you will be able to get food stamps for 1-2 years before you will be asked to fill out another application.
- You can get help with your food stamp application at your local Area Agency on Aging if you are 60 or older; or Community Action Agency if you are person with a disability and under 60.
Other Programs That Share Food And Bring People Together
- Commodity Supplemental Food Program (CSFP). This program provides food to people 60 and older, pregnant and postpartum women who do not get WIC benefits, and children from age 5 to 6. Eligibility is based on income. Food packages are delivered to sites around the state, and participants pick up their food package. For more information and an application, call 800-214-4648. This is a free call.
- Serve New England.Serve New England is a food-buying program. Every month Serve participants can order frozen meats, vegetarian items, fresh fruits and vegetables, while saving about 30 percent off the retail price of these foods. Serve accepts food stamps to pay for food packages. Anyone who volunteers at least two hours per month anywhere in his or her community can participate. Volunteer service is “anything you do for someone else, outside of your immediate family, without pay,” such as giving an elderly neighbor a ride to the doctor´s office, helping out at your local food pantry, or watching a neighbor´s kids while she works. For more information, check out Serve New England or call toll free, 1-888-742-7363.
- Eat For Health, A Program Of The Vermont Department Of Health
If you’re healthy and want to stay that way, do you know what to eat?
If you’re living with a health condition and want to feel better, do you know what to eat?
Suggestions on what and how much to eat can be confusing, especially when you are hearing conflicting advice. Now there’s a Web site sponsored by the Vermont Department of Health to help you find practical information you can trust on food and nutrition, healthy cooking, health eating and what makes a healthy diet: http://vermonthealth.gov/eatforhealth.
Need more information? Want help applying? Visit the www.vermontfoodhelp.org Web site or call the Senior Help Line (1-800-642-5119), the VCIL I-Line (1-800-639-1522, voice or TTY) or your local Community Action Agency.
by Hector Racine
The forecast called for a storm that entailed severe winds, snow and rain. Rutland and surrounding areas would likely experience power outages and treacherous roads. As I sat in my bedroom, I decided to have my LNA pack my bags to get me out of my house. I did not have backup heat, power, or family that could accommodate me or my disability. That and the fact that I have an air mattress that requires power to keep it inflated, made me realize that I was not going to fare well if this storm turned out the way the weather people predicted.
I am a C-5 quadriplegic, from an accident that happened when I was a teenager. This means that I am not only confined to a power wheelchair, but also require a lot of care just to perform my activities of daily living. I had weathered other storms in the past, but the way this one was predicted, I was not sure how I would fare this time around. At the point I decided to leave my home, I had not known or heard of a plan that would accommodate people such as myself in the event of a disaster. Later I was to find out some of the options, but not until the storm had passed and the worst was over.
I had the option of staying with a friend who had the ability to accommodate not only my personal care needs, but also my need for heat, power, water, food preparation and who was available to me in whatever way I needed during the three days I was basically trapped inside her home. We had a cell phone, and wood stove for heat. We cooked with a gas range and used bottled water that she had stored for drinking and cleaning. The water from her backyard pool was brought in for flushing toilets. Her four-wheel drive truck was able to get through the worst of the road conditions in order to get to Home Depot down the road for batteries and other supplies. Gas lanterns and a generator provided lights and an outlet for my battery charger to charge my electric wheelchair. A battery-operated radio kept us somewhat informed about what was going on outside in the world, although there was little open and few on the roads. Gas was virtually not existent. Rutland was for the most part a disaster area. We did not know the extent of storm damage until days later.
Once during the first day of the storm, Rutland Town firefighters were going door to door to check on their residents. Two of them visited the home I was staying at to make sure we were OK and did not need anything. There were power lines down across the driveway, and trees uprooted and blocking us in everywhere. In speaking with my sister who lives up the road from my home in Brandon, and works as a nurse at the Rutland Hospital, Brandon was a mess as were most of the streets in Rutland. Power would be out for several days. Stores were closed and very little communication regarding what was going on could be found. The one station that we brought in on the radio gave basic information regarding places that were open, people who needed help, and where there were accommodations for those who needed food, shelter, etc. I have the home health service, Rutland´s Visiting Nurse Association, come into my home three times a day, to help me. There are many people in the area who like me depend and count on these people to get them through their day. These people were stretched to the limit during this storm and I was glad that I was one less person who did not need to have them drive through the mess, although there were many who did need them.
I was one of the lucky ones who fared well during this storm, but what about the many others who had no one to fall back on or no place to go? What about those on oxygen? Those who live alone, have no backup heat source, no way to prepare a basic meal? Rutland had water, but what about those who live in outlying towns who depend on wells for their water? Once power goes, so does the water supply. This made me think, what is out there for those who depend on others for needs that in an emergency such as this storm may not be able to accommodate them in the way they would otherwise be able to? Does Rutland have a plan? If so what is it? How do we find out what it is or what to do in an event such as this one?
Are you prepared for a flood, a storm, or a local emergency? In late June VCIL is hosting a Rutland area meeting on emergency planning for individuals with disabilities and Deaf Vermonters. We have offered similar trainings for individuals with disabilities and Deaf responders in the Brattleboro area and worked with our peers in the Montpelier area during winter when flooding was a big concern. Follow up information from the meeting will be posted on VCIL´s Web site. To request information or learn more about preparing for a local or state emergency, visit VCIL´s Web site (www.vcil.org) or call us at VCIL´s I-Line: 1-800-639-1522.
Hector is a Peer Advocate Counselor for the Vermont Center for Independent Living and a founding member of the Rutland Area Disability Action Committee (RADAC). He can be reached by calling 1-800-639-1522 or by e-mail at Hector5 at vcil.org.
|VCIL Tips For Getting Ready For An Emergency
Merely registering as a person with special needs is not the answer.
You should have an emergency bag prepared if you have to evacuate your home or office. The bag should include:
If you have a service or support animal your emergency bag should include:
If you are to shelter in place you should have:
“Jack has been a good grace for some of us up around here. He´s been generous with his time and a pure gentleman.”
by Stefanie Monte
Jack Rogers of Newport believes that life should be about celebrations.
“Disability is not the focus of living and life,” he said in a recent interview. “Being happy is the focus.”
For roughly a year now, Rogers has strived to make people happy through his work as a peer advocate counselor for the Vermont Center for Independent Living. Rogers, a former art teacher, was hired thanks to a grant from the Vermont Statewide Independent Living Council and funding from Green Mountain United Way to provide cross-disability peer counseling to people in Essex and Orleans counties.
Photo by Sienna Rogers
“I’m a sticky note guy. That’s my filing system at the moment,” Jack Rogers said.
Rogers is no stranger to living with a disability, having been diagnosed with Parkinson´s disease about seven years ago.
Rogers said he got his feet wet on the job by contacting hospitals, nursing homes, and agencies such as Rural Community Transportation (RCT) and the Division of Vocational Rehabilitation. He let them all know that there is an advocate for VCIL in the area. Most of his initial work, however, was meeting with peers. Rogers has worked with interested peers and people with disabilities to set up community meetings and group discussions.
“I like the one-on-one thing and I get a lot of satisfaction out of seeing peers,” he said. He has made a lot of friends as he directs people to places where they can find help.
One of the friends he has made is Sharon Howe of Island Pond.
“Jack has been a good grace for some of us up around here. He´s been generous with his time and a pure gentleman,” said Howe.
Rogers noted that a lot of the people he works with are in their 40s; they´re not yet eligible for senior programs and may not meet Medicaid guidelines. When agencies refer this type of person to him, he provides counseling and instant support.
“The difficult part in doing this work,” Rogers said, “is I´ve come across a lot of peers who are either not old enough or not sick enough or (who fall) somewhere in between the cracks where nothing actually matches with their needs.”
However, Rogers said, “Things seem to work out in the long run somehow. Sometimes (peers) find they have a lot more resources than they realized they did.”
But “falling between the cracks” is not the only issue that Rogers´ peers face.
“Transportation is always the big one – transportation and isolation up here and socialization,” Rogers said. He noted that peers have a hard time being able to interact with their communities and finding transportation just for their daily routines.
To combat that problem, Rogers says he plans to work with people from an organization called NEKIME (Northeast Kingdom Independence Made Easy). It´s a small group, he says, but a group that is starting to see it can´t rely on agencies to improve transportation for people with disabilities in the Northeast Kingdom.”We´re going to have to undertake some of our own fund raising and possibly even get our own van going, an accessible van.”
Rogers noted that the Kingdom does have an RCT bus, but resources are limited.
“I think that the community really has to undertake a lot more organizing and not expect the agencies to do things for us.”
The community that Rogers speaks of could encompass organized carpooling, friendships, clubs and support groups. Rogers would like to see the community work together more instead of relying on the government. “Take our own action,” he said.
Transportation is not the only challenge that Rogers faces as a PAC working out of the state´s most rural area. Vermonters are known for their independence and that independent streak runs especially deep in the Northeast Kingdom.
“This is really up in the Kingdom,” he pointed out. “A lot of times people are not willing to ask for help because of their pride or independence. That creates a little difficulty.”
However, Rogers feels he has succeeded in letting people know that VCIL has a presence in the area. He now has contacts with hundreds of people. VCIL PAC program manager JoAnn Gibson praised Rogers for his ability to connect with people as well as for his commitment to his job.
“It´s a 12-hour-a-week job but it turned out to be a lifetime job really,” said Rogers.
Gibson also praised Rogers for his efforts in helping get three people released from a nursing home. They are younger people with disabilities and Rogers expressed pride in the accomplishment.
Another highlight of Rogers´ career with VCIL is the work he´s done with a young man who until recently was incarcerated at the Northeast Regional Correctional Facility in St. Johnsbury. Every other Monday for about four months, Rogers visited the prison to work with the person, who has been released to a community in southern Vermont.
His meetings with the young man mark the start of an exciting new project for VCIL. The organization has become involved with the Community High School of Vermont, which is designed to serve people under the custody of the state Department of Corrections who have not obtained a high school diploma. The mission of CHSVT is to provide an accredited, coordinated and personalized education that assists students in their academic, social and vocational successes. VCIL´s role in the program is to help inmates with disabilities transition into the community after they are released.
“It´s the transitioning that´s the critical part,” Rogers said, noting that during transitional periods a person could go back two steps instead of ahead if things aren´t in place.
Moving forward is something that´s clearly at the top of Jack Rogers´ agenda. That´s part of the reason he recently attended the 13th Annual Parkinson´s Unity Walk in New York´s Central Park.
“We went down on the bus and stayed at a fancy hotel. It was grand, really. Michael J. Fox was there, and Muhammad Ali´s wife and daughter were there.”
About 11,000 people attended the event, Rogers said, and $1.5 million was raised for research and the development of Parkinson´s disease therapies. Rogers brought back all sorts of literature and information to share with his Parkinson´s support group.
“It was totally uplifting and very hopeful,” he said. “It was nice because it was a very cheerful event and everyone looked beyond the disability.”
Rogers´ description of the Parkinson´s Unity Walk seems to echo the approach he takes to life: looking beyond the disability to see the joy in life and helping VCIL peers to do the same.
Stefanie Monte is a VCIL employee who previously worked as a journalist in Vermont.
by Kim McCarty
I went to Chicago to attend a conference called “Housing A Matter of Justice” at Access Living. Access Living is our “sister” Independent Living Center. Like VCIL, it is a community-based nonprofit, non-residential, cross-disability service and advocacy organization operated by and for people with disabilities. The conference was held at Access Living´s new headquarters.
The conference was about accessible, affordable, integrated housing and how to get it. It amazed me how many peers attended to learn how they could get accessible affordable housing and to learn about their rights. Peers ranged in age and in disability but they all came together on one topic — accessible, affordable, integrated housing. They all want and need housing. They came together to find out what they needed to do to get it.
Peers learned about “The Power of 504,” which means any entity that receives or received federal assistance shall give equal access to individuals with disabilities in all programs, services and activities. If a housing provider receives federal funding to build or rehab a building and they offer housing and services, people with disabilities must have equal access. In Vermont, if you believe this is not being done you can contact the Vermont Center for Independent Living, Human Rights Commission or your local HUD office.
I watched the peers as they advocated for what they needed and argued their points. They did not ask service providers to advocate for them. They did it themselves. They were recognized and heard. Solutions were developed. Answers were given. They did not let anything stand in their way.
We seem to be more passive in Vermont, less vocal. We ask for solutions. It is time we demand them and take a more assertive approach on getting what we need to survive. No more excuses. People with disabilities have the right for equal opportunity. It´s time to be heard. Everyone has the right to affordable accessible integrated housing. Now let´s come together and fight for it. If you want to learn more on how you can come together and fight for accessible, affordable, integrated housing in Vermont, please contact Kim McCarty at VCIL at 1-800-639-1522, 802-985-9880 or kim at vcil.org
by Sarah Wendell Launderville
The Vermont Housing and Conservation Board (VHCB) recently celebrated its 20th anniversary. VHCB is an independent, state-supported funding agency providing grants, loans and technical assistance to nonprofit organizations, municipalities and state agencies for the development of perpetually affordable housing and for the conservation of important agricultural land, recreational land, natural areas and historic properties in Vermont.
One of the programs that VHCB supports is the Home Access Program (HAP) at the Vermont Center for Independent Living. HAP provides entry and bathroom accessibility modifications for low-income Vermonters with physical disabilities. These modifications increase opportunities for participation in the civic and social life of the community.
Through VHCB´s support Vermonters with disabilities are more independent and are able to rejoin their communities and become employed.
Thank you to everyone that works and supports the Vermont Housing and Conservation Board!
Sarah Wendell Launderville is the Home and Community Access Manager at VCIL. For more information about these programs, visit our Web site (www.vcil.org) or call us at 1-800-639-1522 (voice/tty).
by Michelle Abare
You may not be aware that there is new technology available that the Deaf community loves. It is called a video phone. This technology allows two Deaf people to call each other over a high-speed line such as a cable or DSL line and talk with each other using sign language. Each person must have a TV with a special camera or a computer equipped with a Web camera that enables the two people to see each other. This new equipment makes calling friends, both near and far so easy, as it allows Deaf folks to use the language they are most comfortable using.
With the advent of this technology has sprung a new relay service called Video Relay Service. If a Deaf person wants to make a phone call to a person that does not have this device, the Deaf person places a call into a call center via the video phone. A sign language interpreter appears on the screen ready to place a phone call for the Deaf person. The call could be to a doctor´s office, friends and family members, the local school, or to order a pizza. The interpreters provide impartial and confidential services. People who are not deaf can also call the video relay center to make a call to a Deaf person.
Compared to the standard TTY Relay Service, the video relay service allows calls to be more fluid and faster. It also means Deaf people can use their preferred language, American Sign Language. Now this is not to say that TTY´s are not important. TTY´s continue to be another way for Deaf people to access the telephone. It is nice to have more options for communication available.
A list of companies that provide video relay services is available through VCIL´s Information & Referral staff; simply call the I-Line at 1-800-639-1522.
Michelle Abare is the manager of the Deaf Independence Program at VCIL.
|How about aginglike a sugar maple?
Our years spinning wrinklesand rings.
Offering sweet waterat the end of Winter
and opening our seasoned armsto Spring.
|Phyllis Larrabee is the first recipient of the new Grace Paley Scholarship Fund for Vermont Writers from the National Writers Union.|
Partnership Funds New Resources On Wellness And Recreation
VCIL is working to make it easier to find accessible recreation and exercise opportunities in Vermont. Starting in July, VCIL is hosting a new calendar and listing service on its Web site: Fitness clubs, recreational and educational programs and other nonprofits offering accessible wellness and recreation opportunities can post their programs and activities on VCIL´s Web site.
In addition, several of VCIL staff and peers are now trained to offer the “Living Well with a Disability” Workshop, a self-help and peer support program created by the University of Montana in partnership with several independent living centers.
For more information on these programs, contact Ericka Reil at 1-800-639-1522. To submit a resource listing for the wellness calendar, e-mail us at theindependent at vcil.org.
A new housing and support service option for individuals recovering from mental illness is generating a lot of hope and excitement among mental health advocates and providers in Vermont. Second Spring opened its doors on May 7. Three Vermonters have already moved in and eight more are expected to transition into the program over time.
Second Spring is located in Williamstown in what was once the Autumn Harvest Inn. Now it welcomes other Vermonters to an important new approach to housing services in Vermont. The new program is shaped by the values of the recovery movement, which recognizes the power of self-help, peer support, and respectful mental health and support services to promote wellness and quality of life for individuals with psychiatric disabilities. Second Spring director Roy Riddle has been working with state policy-makers, mental health service providers and advocates, recovery educators and peer support organizations to get the new residency option program going.
Supporters hope Second Spring is the first of several recovery-oriented housing programs developed in Vermont.
by Morgan Brown
A friend of mine who as I understand it had been born and raised in the Williamstown area, whose grandparents had once owned, worked and farmed the property of what later became the Autumn Harvest Inn, told me about how some of their family would often gather at the Inn for small reunions once a year or so, and also tour the place.
One weekend day during mid-August of last year my friend brought me for a ride there and showed me around as best they could.
It was of course evident at the time that some of the Inn would certainly require quite a bit of work and rehabilitation; however, it was also clear to me that it was a nice place. Additionally I also sensed a strong healing energy in and around the entire property, both inside and outside.
Overall, I believe this is an excellent site and property, not just because of the scenery either. There is definitely a healing energy and I hope it stays that way.
The concept of recovery needs to be much more than just a part of its general name or description as a Community Recovery Residence (CRR) and should be the very foundation the facility is built upon.
If recovery functions as the core of everything that goes on there, hopefully the healing energy I could sense flowing freely throughout the former Inn and surrounding property will then end up becoming a real part of the lives of everyone who enters, stays, works and eventually moves on from the Williamstown CRR.
For more information and news concerning mental matters within Vermont, check out the Beyond Vermont State Hospital (VSH) blog: http://beyond-vsh.blogspot.com/. Read about, comment on and discuss mental health matters in Vermont via this team blog.
Morgan W. Brown is an advocate, writer and Web blogger on housing, homelessness and on mental health issues. He lives in Montpelier, Vt.
New Web-Based Clearinghouse For Affordable Assistive Technology Launched
WATERBURY — The Vermont Department of Disabilities, Aging and Independent Living´s (DAIL´s) Division of Vocational Rehabilitation (VocRehab Vermont) and the Vermont Assistive Technology Program unveiled a new Web-based clearinghouse for affordable assistive technology, daily living and accessibility devices throughout the New England region. This new site, www.getatstuff.com, offers New England residents the opportunity to buy, sell or donate a variety of used products ranging from communication devices and wheelchairs to ramps and mobility devices.
“The goal of the Assistive Technology Exchange in New England and the Web site is to get assistive technology devices that are no longer being used into the hands of people who need and can benefit from them. And because these devices are often expensive, it is Gov. Douglas´ hope that this new service will help more Vermonters access this critical technology at prices they can afford,” said outgoing DAIL Commissioner Patrick Flood.
The site is the result of collaboration between Assistive Technology programs in the six New England states. Types of items you may find on www.getatstuff.com are:
- Vision and hearing – for example, magnifying machines and assistive listening devices.
- Speech communication – for example, electronic augmentative communication devices.
- Learning, cognitive, developmental – for example, electronic organizers and specialized calculators.
- Mobility, seating and positioning – for example, walkers or power wheelchairs.
- Aids to daily living – for example, switch-adapted small appliances or multi-sensory alerting devices.
- Environmental adaptations – for example, lifts, lighting controls and ramps.
- Transportation and vehicle modifications – for example, modified vehicles, hand controls, or extended directional mirrors.
- Computers and computer-related – for example, alternative keyboards and mice, software and hardware that make computers accessible.
- Recreation, sports, and leisure – for example, mono skis and tandem bikes, switch adapted toys and games, musical instruments, and adapted hunting and fishing equipment.
For more information, visit www.getatstuff.com or call the Vermont Assistive Technology Program at 1-800-750-6355 or their partner, Vermont Parent Information Center at 1-800-639-7170. The Vermont Assistive Technology Program (VATP) is funded by the Assistive Technology Act of 1998 (as amended), to increase statewide access of assistive technology to people of all ages and abilities. VATP serves children and adults with disabilities and their families, older adults experiencing difficulty with daily activities, and professionals in disability-related fields such as health care, social services, education, or other human services.
By K. K. Wilder
“A Love-Able Couple”
Ron and Sarah Juckett, 35 and 34, worked together at the Vermont Center for Independent Living in Montpelier.
Sarah tosses glossy brown curls and says, “My first impression, and it´s still true, is that he was a truly good-natured man.
“And mine of her was that she was, well, chatty!” Ron teases, hazel eyes sparkling.
“Before long, we became close and I asked him out …”
“… to a Chinese restaurant,” adds Ron.
“… and I soon realized he really liked to eat,” Sarah recalls, “so I asked him over for supper on Valentine´s Day…”
“… when she cooked steak and lobster tail for me!”
Sarah grins. “Yeah, my grandfather always told me to keep cooking because I could get a man through his stomach.”
And she did.
“Actually, I knew about a month into it we´d end up together,” Ron says. He proposed the following May and they were married in August of 1998.
Sarah is deaf, wears aids in both ears, and reads lips. Ron´s arms are permanently crossed over his chest, hands bent and frozen at an impossible angle. His legs are tiny, uneven. He gets around in an electric wheelchair he controls with his right elbow.
Ron was born with arthrogryposis. All his joints, except those in his jaw and spine, are contracted and frozen. “Specialists believed it was a genetic mutation. My father worked at GE in Fort Edward, New York, running a fork lift that dumped PCPs and other chemicals into the Hudson,” he explains. “It was the same type of thing found in Love Canal.”
Ron is referring to another New York town where, in 1978, the blue-collar community uncovered a serious public health crisis resulting from the burial of chemical wastes in their small suburban neighborhood. “Mine was among the first 500 cases,” he continues. “I had six surgeries as an infant. They tried to straighten my legs, to no avail.”
But Ron´s IQ was high. He could talk at six months, read at 18 months, learned to tap out letters on an electric typewriter with a chopstick at age three, and at four became the youngest Vermonter to enter first grade.
Smart or not, Ron was ridiculed by his classmates in his small rural town. It wasn´t until high school, when he attended Harwood Union School where there was far more diversity among students, that he finally had a chance to be seen beyond his disabilities.
Meanwhile, Sarah was experiencing her own hard times. Until kindergarten, no one realized that she was deaf. “My teacher discovered my deafness,” she says. She helped Sarah with her hands, “feeling sounds,” much the same way Helen Keller learned. But Sarah had a very short memory for learning and a hard time making friends.
Finally, in third grade, Sarah received her first hearing aids, big chunky boxes with wires. Add her braces and glasses and she became a target for her classmates. “In fifth grade, I got new aids that were molded inside my ears, but still with lots of wires, and they let in lots of background noises,” she recalls, “and I only heard parts of words. So her classmates continued to call her “four eyes” and “sonic bat girl.” Sarah learned to read lips. Then she used her natural outgoing personality and began to tell highly imaginative and entertaining stories to her classmates. They greatly enjoyed them and Sarah began to win friends.
Today, Ron still taps out online correspondence letter by letter, word by word. “But now I use a computer and my tapper isn´t chopsticks,” he says, looking toward his wife.
She grins. “Yeah, I got tired of him getting splinters in his mouth, so I introduced him to a smooth wooden spoon.”
Ron is attending Westwood On-line College, working toward a Bachelor´s in e-business management. Sarah´s a licensed nursing assistant, studying physical therapy at the Community College of Vermont.
In the evening, while Sarah´s at her job at Starr Farm Nursing Center in Burlington, Ron can often be found on Church Street with his cronies, discussing his heroes, the Boston Red Sox. On the back of his wheelchair a bumper sticker reads “David Ortiz for President.” Ron also likes watching biographies and the History Channel on television.
Sarah raises vegetables and flowers in the back yard of their apartment. She collects Marvel and DC comics as well as Anime (Japanese animation), enjoys reading Sci-Fi and Fantasy, and watches the Discovery Channel on TV. And she obviously loves that guy called Ron.
Our interview ends and it´s time for a photographer to take a picture. Without hesitation, Sarah throws both arms around Ron´s muscular neck and he pushes his cheek into her face. She chuckles; he smiles like a Cheshire cat. You can tell easily that life is good for Ron and Sarah Juckett. “He´d go to the ends of the earth for me,” she says. He smiles and nods his head. “You bet.”
Ron and Sarah Juckett are a living example of two people who, regardless of challenges, know they are totally love-able.
(K.K. Wilder lives in Vermont. She can be reached through The Independent or at KKWilder at aol.com)
The Boards of Directors of Vermont Parent Information Center and Parent to Parent of Vermont are happy to announce a merger between the two organizations has been approved.
We are excited by this opportunity to provide a continuum of support to families that is family-centered, comprehensive, and easy to access. By merging, Parent to Parent and the Vermont Parent Information Center combine their talents and expertise in partnering with families and professionals to achieve better outcomes for children and adults with special needs.
For more information, please contact Connie Curtin, VPIC Executive Director, at 876-5315, or Julie Arel, P2P Executive Director, at 764-5290.
In 1990, President George Bush said the “barriers of discrimination must come down.”
Join us, rain or shine, on the Statehouse lawn in Montpelier, VT.
Under The Big Tent
Thursday, July 26th
11 a.m. until 2 p.m.
Barbecue lunch will be served.
Please call Ericka at 1-802-229-0501 for more information and to RSVP.
ASL Interpreters will be provided.
|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)|
Submissions must be received by September 7, 2007