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.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Family Empowerment Representative
Michelle Boom, volunteer Family Empowerment Representative,
[email protected] 1-207-514-4044
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
State Agencies & Resources
Local Service Agencies
New Hampshire Department of Health and Human Services (DHHS)
Visit New Hampshire Department of Health and Human Services (DHHS) Website
The New Hampshire Department of Health and Human Services (DHHS) provides services for individuals, children, families and seniors, and administers programs and services such as mental health, developmental disability, substance abuse, and public health.
Parent Information Center (PIC)
Visit Parent Information Center (PIC) Website
The Parent Information Center (PIC) is a New Hampshire statewide family organization which strives to achieve positive outcomes for children and youth, with a focus on those with disabilities and special healthcare needs. The Parent Information Center (PIC) and its various grant programs address a variety of key issues in order to help parents support their children’s success in school and in life.
Visit CSHCN Website
Children with special health care needs (CSHCN) are those who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions, which require health and related services of a type beyond that, required by children generally. Services include, Care Coordination, Neuromotor Clinic, Nutrition Feeding and Swallowing, Child Development and Psychology.
Visit Care Coordination Website
Care Coordination provides community-based care coordinators to assist families to access needed healthcare and related services for children with chronic illness or disability, including help with finding medical, social, psychological, educational and financial assistance and resources.
Visit Neuromotor Clinic Website
Neuromotor Clinic provides a specialized team approach and coordinated care for children with physical disabilities associated with significant orthopedic, neurologic, muscular and motor coordination delays.
Nutrition, Feeding and Swallowing (NFS) Program
Visit Nutrition, Feeding and Swallowing (NFS) Program Website
Nutrition, Feeding and Swallowing (NFS) Program provides a statewide network of pediatric nutritionists and feeding specialists offering in home consultation.
Visit Child Development Website
A statewide network of five programs to provide a community-based approach to state-of-the-art diagnostic evaluation services, for children ages 0-6 suspected of or at risk for altered developmental progress.
Visit Psychology Consultation Website
Information and Referral Services are available to any family regardless of financial eligibility. A major focus is triage to community services and problem-solving regarding gaps in mental health services.
Bureau of Developmental Services
Visit Bureau of Developmental Services Website
The NH developmental services system offers individuals with developmental disabilities and acquired brain disorders a wide range of supports and services within their own communities. BDS is comprised of a main office in Concord and 10 designated non-profit area agencies that represent specific geographic regions of NH.
Medicaid Disability NH
Children's Medical Assistance- Children's Medicaid (CM)
Visit Children’s Medical Assistance- Children’s Medicaid (CM) Website
Children’s Medical Assistance- Children’s Medicaid (CM) provides free health and dental coverage for children up to age 20 with net income no higher than 196% of the federal poverty levels (FPL). You can apply by printing out the application, completing it, and mailing it into your local District Office. You can also apply online.
Expanded Children's Medicaid (Expanded CM)
Visit Expanded Children’s Medicaid (Expanded CM) Website
Expanded Children’s Medicaid (Expanded CM) provides free health and dental coverage for children up to age 19 with net income higher than 196% of the FPL but no higher than 318% of the FPL. Apply through DHHS.
Children with Severe Disabilities (CSD)
Visit Children with Severe Disabilities (CSD) Website
Children with Severe Disabilities (CSD) provides special coverage for disabled children up to age 20 with income no higher than 196% of the FPL. The disabled child does not have to be living with a parent or relative to receive this coverage.
DHHS Phone Directory
Medicaid Client Services
Family Services Specialist (FSS)
Visit Family Services Specialist (FSS) Website
For HCCSD, CSD and CM questions you may wish to talk to a Family Services Specialist (FSS) about your situation and your needs. During this interview, the FSS will tell you about program requirements. The FSS will also tell you about your benefits.
Family Centered Early Supports and Services (FCESS)
Visit Family Centered Early Supports and Services (FCESS) Website
Family Centered Early Supports and Services (FCESS) is New Hampshire’s Early Intervention program. The program is designed for children birth through age three who have a diagnosed, established condition that has a high probability of resulting in delay, are experiencing developmental delays, or are at risk for substantial developmental delays. Anyone who is concerned about an infant or toddler’s development, including a parent, may make a referral to FCESS. Family centered early supports and services are provided within a child’s home or where a child spends time.
Parent Information Center (PIC)
Visit Parent Information Center (PIC) Website
The Parent Information Center (PIC) is a New Hampshire statewide family organization which strives to achieve positive outcomes for children and youth, with a focus on those with disabilities and special healthcare needs. The Parent Information Center (PIC) and its various grant programs address a variety of key issues in order to help parents support their children’s success in school and in life. [email protected]
RSA 464-A is the New Hampshire Statute that covers guardianship procedures and RSA 547-B is the New Hampshire statute that describes public guardianship programs. If you have questions about guardianship you can contact either public guardianship agencies, Tri-County CAP Inc. Guardianship Services or Office of Public Guardian. You may also be able to obtain information from a mental health center, area agency, attorney, nursing home, or hospital.
Transition to Adult Services
Next Steps NH
Visit Next Steps NH Website
The Next Steps NH website provides information and resources to parents, school staff and students about planning for life after high school.
Visit NH DMV Website
To obtain a placard, the Application for Walking Disability Privileges must be completed a signed by both the applicant and a physician. It must include a brief description of the medical condition and how it limits or impairs the applicant’s ability to walk. The form must then be mailed to NH Dept. of Safety, DMV – Registration, 23 Hazen Drive, Concord, NH 03305. There is no fee for a disability placard. To renew a placard, applicants follow the same procedure as required for the initial issuance of the placard. It is recommended that this be done in the first or second week of the month in which the placard will expire. Both Temporary and Permanent walking disability placards may be obtained at any DMV Registration Office.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].