Vermont Resources

Family Empowerment Representatives | Treatment and Research Centers | VT State Agencies | Parent Recommendations


Family Empowerment Representatives


Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome.  Contacting them should be your first step.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

Shelly Waterman, volunteer Family Empowerment Representative  maw2h@yahoo.com  1-802-343-6775

Treatment and Research Centers

Clinics & Clinical Trials - none at this time


 State Agencies - Vermont


Local Service Agencies

Office of Children With Special Health Needs (CSHN)

 1-800-660-4427

The Office of Children With Special Health Needs (CSHN) provides a number of services to Vermont children - birth to age 21 - who have complex health conditions, and to their families. 

Vermont Family Network

VFN's Developmental disability services assist children, adolescents, and adults who have a developmental disability to live, attend school, work, and recreate in their communities. These services are provided by The Division of Disability and Aging Services (DDAS). They partner people with developmental disabilities, families, guardians, advocates, service providers, and state and federal agencies to plan, coordinate and administer services. The Division also provides guardianship services to people who have been determined by the court to be in need of guardianship supports.

DDAS Developmental Disability Services

Eligibility for services is determined by the designated agency in the county. If a person meets the eligibility criteria as a person with a developmental disability, he or she does not automatically qualify for funding.

The Bridge Program: Care Coordination for Children with Developmental Disabilities

 1-802-241-2648

The purpose of the Bridge Program is to assist families of children under age 22 who have developmental disabilities to access and coordinate needed medical, educational, social or other services. 

Flexible Family Funding

Funding is provided to eligible families of individuals with developmental disabilities to enhance their ability to live together. These income-based funds, determined by a sliding scale, are used at the discretion of the family. Contact your local developmental disability Designated Agency if you are interested in or want to apply for Flexible Family Funding.

Developmental Services Information  

If you need developmental services please contact the Designated Agency (DA) in your local area and ask for an intake assessment. When you first ask for services you will need to be assessed for the most appropriate program to meet your needs. Intake coordinators are located at each agency. They will schedule a meeting for you in order to complete the intake assessment.  Intake coordinators will help you determine what programs and services might be helpful for you, and what you need to do to apply for services. Not all programs have the same eligibility criteria or services available, so it's important to work with the Intake Coordinator to agree on what your needs and strengths are, what services are available to you, and what you need to do to apply for services.

Developmental Disability Services Providers


Handicap Placard 

Vermont DMV

 1-802-828-2000

Application for either (special) disabled registration plates or disabled windshield placards may be made to this Department.  

Disabled Parking Placard Application

Universal Medical Evaluation/Progress Report Form 

This form must be completed and signed by a licensed physician, certified physician assistant, or licensed advanced practice registered nurse. The DMV will file the form for future reference and issue the placard or plate if the applicant is found to qualify. A new medical application must be submitted  every four years in the case of placards and at every third registration renewal for plates (but in no case greater than every four years).


State Medicaid   

Medicaid for the Aged, Blind or Disabled (MABD) Application

 1-800-250-8427

You can apply online or call and receive an application in the mail. 

Children's Personal Care Services (CPCS)

 1-802-865-1395

Children's Personal Care Services (CPCS) is a state plan Medicaid program available to children under the age of 21, with a significant disability or health condition that substantially impacts care giving needs and/or the development or self care needs.  The Vermont Department of Health oversees CPCS.  In order to apply, the family and child must work with an individual trained to complete the CPCS application. Staff at each Designated Agency and many of the Specialized Services Agencies have been trained to complete the CPCS application and are available to assist families to apply for this support. 

Katie Beckett and Disabled Children's Home Care (DCHC)

 1-800-250-8427 Health Access Member Services Unit

Katie Beckett and Disabled Children's Home Care (DCHC) is a program enabling children with disabilities who might otherwise not qualify to obtain Medicaid EPSDT services.  The parent’s income and resources are NOT counted, only the CHILD’S income and resources are counted toward eligibility. To qualify, the child must be under the age of 19 and have a disability. The child must need a level of care given in hospitals, nursing homes, or in-patient care facilities. You can apply by calling The Health Access Member Services Unit. Ask for the application package specifically for the Katie Beckett Program. They will send you the forms.

6 Ways to Access Medicaid / EPSDT for Vermont's Children

This is an excellent tool to help you navigate Medicaid in Vermont.

Vermont Health Connect

 1-855-899-9600

Vermont Health Connect has information on all health care plans in Vermont. 


Early Intervention

Children's Integrated Services (CIS)

Children's Integrated Services (CIS) offers early intervention, family support, and prevention services that help ensure the healthy development and well-being of children, pre-birth to age 5.  Services are available at low or no cost to families. Contact your local CIS Coordinator ( below)

Children's Integrated Services Coordinators


Education   

Vermont Agency of Education Special Education Team

 1-802-479-1255

Vermont Special Education Organizations


Conservatorship

Once children turn 18, they are responsible for their own financial, medical and legal decisions. Adults can sign legally binding contracts and make decisions on where they live and whether or not to go to school. Some parents feel their adult child with a disability cannot make good decisions and become their child’s legal guardian to keep their child safe and protected. However, adult children under guardianship lose some rights and independence, so the decision to seek guardianship is an important one. Alternatives to guardianship should be the first consideration before seeking guardianship over another individual.

Vermont Family Network Guardianship Resources


Transition to Adult Services   

Secondary Transition Planning Resources

Transition to Adulthood Toolkit


Parent Recommendations

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org


Medical Professionals

ClinicalTrials.gov  

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy) 


Legal Resources 


Recreation


More Parent Recommendations 

New Hampshire/Vermont Rettsyndrome.org Families Facebook page

Click and ask to join!