VCDR’s 2008 Legislative Update

This was a challenging year at the Statehouse. VCDR is pleased to have achieved some important successes despite major budget woes. Many individuals and organizations helped bring disability issues to the attention of the Vermont Legislature.

Our thanks to the Vermont Developmental Disabilities Council, to individual donors and our member organizations for their funding support this year and to the many individuals and organizations who shared their stories and helped us work on these issues throughout the 2008 legislative session.

Thank you to all the Vermonters who joined us on April 15 for Disability Awareness Day and to the many members of the House and Senate who worked so hard on our issues. It was a difficult year and we owe a great deal to the legislators and citizens who worked with us to achieve some important successes.

The following is a brief summary of some of the bills and budget issues VCDR worked on this year. We will be back next year working on these and other issues with a new Legislature. Please share your stories and concerns with us and with the candidates in your district.

H.617 updates Vermont’s guardianship statutes. The bill states that it is designed to “encourage the development and maintenance of maximum self-reliance and independence in the individual and only the least restrictive form of guardianship shall be ordered.” The major intent was to clarify that guardianship should only be granted for those activities where it is necessary. For instance, if a person only needed help with handling money, the probate court should only grant a financial guardianship, not a total guardianship.

The bill as passed retains the jurisdiction of the family court under Title 18. It changes the decision-making process guardians must follow in extreme medical circumstances. The new language clarifies important rights and protections but it also gives guardians a greater authority in order to lessen the time it takes to make medical decisions: If a person has an advanced directive in place, the advanced directive takes precedence over the guardian. When there is no advanced directive the new language defines an expanded role for guardians in medical decision-making. A guardian can withhold or withdraw life-sustaining treatment without prior probate court approval if obtaining such approval would be “impracticable due to the need for a decision before court approval can be obtained.” The bill also allows for a guardian to consent to a do-not-resuscitate order without probate court approval if they obtain a clinician’s certification that the person under guardianship is “likely” to experience cardio-pulmonary arrest before probate court approval can be obtained. These changes can speed medical decisions but also create some challenges in safeguarding the rights and interests of individuals under guardianship. The bill also creates a “guardianship education, improvement and accountability task force” to study ways to improve guardian accountability and protect the rights of individuals under guardianship and to provide training and support to guardians.

S.281, legislation that creates a legislative study committee to prepare a report on the state of palliative and end-of-life care, and pain management in Vermont. Three senators and three representatives will serve on the committee as well as representatives of a broad range of state agencies, health care organizations and senior and disability organizations. The committee is charged with looking at Vermont’s capacity to provide quality end-of-life care (including children’s hospice care), consumer protections, and pain management across the lifespan (not just at the end of life). The legislative committee must provide a written report of its findings and recommendations by Jan. 15, 2009.

H.615 and H.635 update the juvenile delinquency statutes and the child abuse and neglect statutes. It was the goal of VCDR to insert language in both bills that recognized the needs of parents with disabilities to have the proper supports to reduce the risk of losing their children into state custody and also address the needs of children with disabilities who may come into state custody. H.635 creates a new “tiered” system of looking at accusations of child abuse or neglect and gives the Department of Children and Families options for responding to these accusations. The bill as passed by the House and Senate contains language that instructs DCF during the rule-making process to make rules that “strike an appropriate balance between protecting children and respecting the rights of parents, including a parent or guardian with disabilities and shall recognize that persons with a disability can be successful parents. The rules shall include the possible use of adaptive equipment and supports.” H.615 passed with language requiring, in a temporary care order, that DCF is required to “refer a parent for appropriate assessments and services, including a consideration of the needs of parents and children with disabilities, provided the child's needs are given primary consideration,” that same language is also in the bill in the sections regarding disposition case plans. The bill also requires a report about how DCF and the courts are meeting the needs of parents with disabilities.

S. 271, an act relating to child support for children with disabilities was introduced by Sen. Virginia Lyons of Chittenden County. The bill as introduced proposed to allow the family court to extend child support for an individual with physical, mental, or developmental disabilities beyond the age of 18 if the cessation of support would place the individual at risk of losing housing, health, or community services. The legislation as passed by both the House and the Senate includes a sunset date of 1012 and limits the court’s authority to extend child support. It reads: “Upon motion, the court may extend child support up to the age of 22 for an individual found by the court to have significant physical, mental, or developmental disabilities. The court shall consider the factors identified in section 659 of this title in making its decision. The parent seeking the order shall provide the court with documentation of the child's disability.” The Governor signed the legislation on May 6, 2008.

H.629, legislation assessing serious functional impairment of prisoners, was not passed. This was a bill that would have changed a designation that the Corrections Department uses to determine what evaluations and services a prisoner with disabilities would receive. The bill offered statutory protections from certain disciplinary procedures for prisoners diagnosed with a “serious functional impairment” – this included persons with developmental disabilities and mental illness. The bill made it through House Institutions, House Human Services and the House Appropriations Committee but never had enough time to make it through the Senate. The Department of Corrections has verbally assured legislators that they will be instituting these changes through their rules process in the department. Alice Emmons, chairwoman of House Institutions, assured VCDR that if the Department of Corrections fails to implement these important protections for prisoners with disabilities on their own, her committee would address this issue again in the next biennium.

H. 273, The Traumatic Brain Injury Trust Fund.  After the House refused to take the bill up in committee, Sen. Ed Flanagan attempted to attach the TBI fee increase to the Fee bill in Senate Finance. When the bill went to the Senate Appropriations Committee, the increase was removed from the bill. The Senate, however, added language to the Fee bill to create the Traumatic Brain Injury Fund that will be administered by the Treasurer’s Office under rules developed by the Agency of Human Services. Instead of raising funds for this fund by increasing auto registration fees, the Senate appropriated an initial $140,000 from the Vermont Campaign Fund. Other than this initial amount, there is no currently established source of ongoing money for this fund.

Senate Finance also put language in the Fee bill (H.691) to institute co-pay for prisoners’ health care. VCDR opposed this proposal. In the conference committee for the Fee bill these fees were taken out of the bill so we have made it through another biennium without prisoner co-pays for health care. Expect this issue to come up again in the next biennium.

Other Issues: VCDR worked with COVE and other organizations to highlight the importance of the Direct Care Workforce Study and will continue to advocate for administrative and legislative action on the recommendations and findings in this report. VCDR also testified in support of S.281, which will help some individuals access needed insurance coverage for prosthetics. We also worked with sponsors of legislation to create a work incentive task force, charged with developing recommendations to expand Vermont work incentives. The Secretary of the Agency of Human Services (AHS) testified in favor of this legislation and said that they would institute such a task force without a legislative mandate. Other VCDR legislative issues were not taken up by committees or became part of the broader budget and health care debates.

The Budget

A significant revenue shortfall made this session a very difficult one for any appropriation issues. Many of our budget requests were included in the final budget. At the end of the session the Joint Fiscal Committee and the administration had made the following decisions on VCDR budget priorities:

Medicaid Benefits: The Legislature looked at adding major cost sharing requirements to Vermont’s Medicaid programs and cutting Vermont pharmacy programs. Ultimately the Legislature decided not to make drastic cuts but did make some increases in beneficiary premiums for pharmacy programs from 10 percent to 20 percent. SCHIP premiums were raised from $40 to $60 for families in the 225 - 300 FPL range. This also affects the Medicaid expanded population.

Early Periodic Screening, Diagnosis and Treatment (EPSDT): There is language in the budget regarding EPSDT and case management appropriating $2,000,000 for Early and Periodic Screening, Diagnosis and Treatment (EPSDT) services for children and adolescents between the ages of 0-22 who have been diagnosed with developmental disabilities and who are Medicaid-eligible. The services to be provided under this appropriation are those required under federal Medicaid law and include case management, and rehabilitative and behavioral therapies.

Children with Special Health Needs Respite Program received a significant cut: Last year’s hard-won $100,000 increase in children’s respite funding was unexpectedly taken out of the CSHN budget. This leaves many families with significant respite needs facing service reductions. This is an issue that VCDR is very concerned about and which we will be addressing in the next legislative session.

Home Accessibility Program: After proposals to make major cuts to the Vermont Housing and Conservation Board (VHCB), the Joint Fiscal Committee added back $5.2 million. The restoration of VHCB funds means that the Home Access Program at VCIL is unlikely to lose funds but the requested increase in HAP funding though the Department of Disabilities, Aging & Independent Living was not funded. The budget also includes $700,000 for VHCB for affordable housing in the Economic Recovery and Opportunity Act.

Developmental Services Funds for High School Graduates: The budget passed by the Legislature adds $1.12 million to fund about 45 Vermonters with developmental disabilities transitioning from high school to work.

This is a significant increase over the administration’s original budget proposal. Many individuals and families worked hard for this increase and VCDR members will be monitoring the implementation closely. The Legislature also added language in the budget bill requiring DAIL and the Department of Education to track the number of anticipated June grads for the next four years and to look at the length, scope, and cost of services June grads receive and “if and how” June grads transition to self-sufficiency or alternate support programs.

For more information about particular bills and other VCDR advocacy activities, or to share your recommendations and concerns, contact us:

VCDR

11 East State St., Suite 2

Montpelier, VT 05602

Phone: 802-223-6140

E-mail: vcdrinfo@sover.net