New Hampshire Resources

Family Empowerment Representatives  | Treatment and Research Centers NH 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


Treatment and Research Centers


Clinics & Clinical Trials- none at this time

 


State Agencies - New Hampshire


Local Service Agencies

New Hampshire Department of Health and Human Services (DHHS) 

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.

DHHS Programs

Parent Information Center (PIC)

 1-603-224-7005

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. 

CSHCN

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.

Care Coordination

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.

Neuromotor Clinic 

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

Nutrition, Feeding and Swallowing (NFS) Program provides a statewide network of pediatric nutritionists and feeding specialists offering in home consultation.

Child Development

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.

Psychology Consultation 

1-207-287-9200

Information and Referral Services are available to any family regardless of of financial eligibility. A major focus is triage to community services and problem-solving regarding gaps in mental health services.

Bureau of Developmental Services 

1-800-852-3345

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. 

BDS Area Agencies

New Hampshire Family Voices 

1-800-852-3345 x 4525

The Family to Family Health Information and Education Centers provide free assistance and support to families of children and youth with special health care needs and those who serve them.  nhfamilyvoices@nhfv.org 


Handicap Placard  

NH DMV

To obtain a placard, the Application for Walking Disability Privileges must be completed an 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.

Application for Walking Disability Privileges

DMV Registration Offices


State Medicaid 

New Hampshire currently has a TEFRA-like waiver and two HCBS 1915(c) waivers that serve children. All three programs waive parent income. An overview of New Hampshire's programs can be found on its Medicaid Disability page. You can apply for Medicaid online at the DHHS Services link below.

Medicaid Disability NH

Children's Medical Assistance- Children's Medicaid (CM)

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 in to your local District Office. You can also apply online.

DHHS District Offices

Online DHHS Services Applications

 

Expanded Children's Medicaid (Expanded CM) 

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)

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

1-603-271-4344

Home Care for Children with Severe Disabilities (HCCSD)

Home Care for Children with Severe Disabilities (HCCSD) is a waiver program for severely disabled children up to age 19 whose medical disability is so severe that they qualify for institutional care but who are being cared for at home. Only the income and resources of the disabled child are counted towards eligibility for this program. Commonly known as the "Katie Beckett" option.

Family Services Specialist (FSS) 

1-603-271-9700

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. 


Early Intervention

Family Centered Early Supports and Services (FCESS)

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.

FCESS Central Directory 


Education 

 Parent Information Center (PIC) 

1-800-947-7005

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.  Info@nhspecialed.org

Special Education Process Overview


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

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.

Guardianship Pamphlet 


Transition to Adult Services

Next Steps NH

The Next Steps NH website provides information and resources to parents, school staff and students about planning for life after high school.

Life After High School Transition Tool Kit

The Life After High School Transition Tool Kit helps families and youth who have an Individualized  Education Program (IEP) learn about the transition planning process. It provides an overview of the laws relating to transition as well as best practices.


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

Disability Rights Center NH

1-207-287-9200

Disability Rights Center NH provides information, referral, advice, and legal representation and advocacy to individuals with disabilities on a wide range of disability-related problems. advocacy@drcnh.org


Recreation


More Parent Recommendations 

New Hampshire/Vermont Rettsyndrome.org Families Facebook page

click and ask to join!