The Heart Of It Winter 2003 Newsletter - Parent to Parent of Vermont

Winter 2003 Newsletter click for links to other newsletter pages

A family support program of Parent to Parent of Vermont providing health information.

Flexibility in PCS Hours
Kids Are Priority One
Early Childhood Day

Flexibility Now Permitted in Use of Personal Care Service Hours
Personal Care Services may be provided for children under age 21 who are eligible for Medicaid/Dr. Dynasaur. A child with physical, behavioral, or cognitive problems could be found eligible to receive personal care if he or she has difficulty with carrying out some or all of the activities of daily living, including bathing, dressing, eating, toileting, grooming, positioning, transferring, or walking.

Personal care services can be provided through a local agency (such as a nursing, home health, developmental service, or mental health agency) that provides services appropriate for the child’s diagnosis or condition or by someone the child’s family chooses to employ under the self-management option.

In the past, a child was allotted a certain number of hours per week in personal care services. If a family or agency was unable to provide a personal care giver for some or all of the hours in that week, or the family used fewer hours due to travel or some other reason, those hours were effectively “lost” for that week. Furthermore, there was no flexibility for a family to use more than the allotted number of hours per week, even if hours had gone unused in previous weeks and more hours were temporarily needed in the current week (for instance, when a child or family member became ill).

This problem was brought to the attention of the State of Vermont Agency of Human Services (AHS, which administers Medicaid), during the ongoing “Respite Summit” collaboration between the Agency of Human Services and advocacy groups led by Vermont Family Voices/Parent to Parent of Vermont and the Vermont Coalition for Disability Rights. This group has been continuing work to make adequate, equitable, flexible, and high quality personal care, nursing, and respite available to all Vermonters with disabilities in need of these services.

At the second “Respite Summit” in Montpelier in June 2002, the Agency of Human Services vowed to provide more flexibility to families in the use of personal care services. Pat House, Commissioner of the Department of Prevention, Assistance, Transition, and Health Access (PATH) has confirmed that this policy is in place. Although personal care service hours will be calculated on a weekly basis, hours may be used flexibly within the total number of hours allocated over a six month period.

Of course, families must be careful not to “use up” all the hours before the six month period is over. In addition, agencies and families employing personal care providers will need to plan ahead for and to avoid wild swings in work hours for employees from week to week. Nonetheless, this new policy should provide families with some much needed flexibility in use of personal care service hours.

Significant challenges remain for families with children who receive nursing, personal care, or respite services. The voices and experiences of families are essential to identify problems and craft solutions. Please contact Joyce Brabazon, Respite Care Coordinator, to share your experiences or problems related to nursing, personal care, or respite services, particularly if you are not being afforded flexibility from week to week in when your family uses personal care services – (802) 764-5290 ext 18 or joyce.brabazon@partoparvt.org ©

Kids Are Priority One Announces the 2003 Legislative Agenda
for Children with Special Needs
Kids Are Priority One (KAP1) is a statewide, grassroots campaign to support early care and education for all young children in Vermont, including those with special needs. At the heart of the campaign is a broad coalition of families, providers, support organizations, and businesses working for passage of KAP1's legislative agenda. Parent to Parent’s Vermont’s Family Voices is one of the sponsors of this campaign.

In the 2003 Vermont Legislative session, Kids Are Priority One is asking for support for services for children with special needs in several different ways. These include:

A new state appropriation of $300,000 to provide accommodations such as individual assistants or specialized equipment for children with special needs in integrated child care settings.
Supports for Vermont State Higher Education Programs in early intervention, and for individual students in these types of programs, to assure availability of quality specialists for early intervention, early special education, speech/language, occupational, and physical therapy.
Continued support for early childhood mental health services (including behavioral, emotional, and social competence) provided by Children's Upstream Services (CUPS) through a federally funded grant program which will be depleted by the end of the state fiscal year 2004.
$20,000 in state funds and additional support in future years for the Family, Infant and Toddler Program (FITP) to cover a projected shortfall in funding to help assure early intervention services to infants and toddlers with disabilities and their families are not interrupted or curtailed.

Each of these approaches is important. CUPS, FITP, and Child Care Services Division supported accommodations in child care, and quality specialists working together forestall subsequent and greater expenses for treatment for children and families. More importantly, early interventions improve outcomes for children with special needs.

For more information on the Kids Are Priority One Campaign, visit www.vtkap1.org or call Kay Van Woert at (802) 985-5668. ©

Early Childhood Day at the Legislature
The 9th annual Early Childhood Day at the Legislature is scheduled for Friday, March 14, 2003 at the Capitol Plaza Hotel and State House in Montpelier. The event is organized by the Early Childhood Work Group and sponsored by the Vermont Association for the Education of Young Children (VAEYC), Parent to Parent of Vermont, and the Community Leadership Program of the Vermont Children's Forum.

The purpose of this annual event is to provide parents of young children and early childhood providers an opportunity to become better acquainted with their policy makers and the legislative process. Participants will be able to make connections to other parents and early childhood professionals, attend workshops, and observe committee meetings and other legislative activities. Early Childhood Day is also a means of providing legislators with important information on the status of early childhood programs that are supported with public funds in Vermont.

This year, internationally known pediatrician Jack P. Shonkoff, MD will deliver the keynote speech. Dr. Shonkoff is the author of From Neurons to Neighborhoods: The Science of Early Childhood Development and he is Dean of The Heller School for Social Policy and Management at Brandeis University. Dr. Shonkoff speaks on the importance of relating public policy and practice to known scientific facts on early childhood experience.

A strong advocate for early intervention services, Dr. Shonkoff calls for public expenditures for early care and education to be invested in high quality programs that promote sustained relationships, address the special needs of children with developmental disabilities or chronic health conditions, and guarantee that all settings are safe, stimulating, and compatible with the values and priorities of the families they serve. Members of Vermont's Children's Cabinet will serve on a panel to discuss how these principles might be applied in Vermont. ©