New Jersey

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, Rettsyndrome.org
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Leslie Greenfield, volunteer Family Empowerment Representative, Freehold NJ
leslieg417@gmail.com 1-732-462-8476

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.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

Clinics

NJ Rett Syndrome Center - Rutgers New Jersey Medical School

1-973-972-2551 for appointments or 1-973-972-7151 for questions
Co-Directors:  Dr. Jeffrey Kornitzer (pediatrics) and Dr. Erin Feinstein (adults)

This center accepts all major insurances and all NJ Medicaid.  All children and adults with insurance or Medicaid can have comprehensive genetic testing without any prior authorizations or out of pocket costs.

State Agencies & Resources

Local Service Agencies

New Jersey Department of Health

Visit New Jersey Department of Health Website
1-800-367-6543
The DOH, via Family Health Services, offers Special Child Health Services (SCHS) to assist families caring for children with complex, long-term medical and developmental disabilities. SCHS also has statewide referral networks that provide comprehensive diagnosis, treatment, patient and family education, and counseling for children and adults living with disabilities.

Special Child Health Services Registry

Visit Special Child Health Services Registry Website
1-609-984-0755
This is a confidential record of infants and children who have birth defects and special health care needs. Individuals aged birth through 21 years with any chronic medical condition are included in the Registry. The Registry serves as the primary link to case management services. Children may be registered by medical professionals, SCHS case management units and early intervention service providers.

Division of Development Disabilities

Visit Division of Development Disabilities Website
This department provides services for adults, age 21 and older with intellectual and developmental disabilities.

Dream Factory of Jersey Shore

Visit Dream Factory of Jersey Shore Website
The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.

State Medicaid

Department of Human Services

Visit Department of Human Services Website
1-800-356-1561
Department of Human Services DHS lists Medicaid information and programs.

Office of Home and Community Services

Visit Office of Home and Community Services Website
This site also lists information on Medicaid Waivers

Online New Jersey Medicaid Application

Fill out the Online New Jersey Medicaid Application

Managed Long-Term Services and Support

Visit Managed Long-Term Services and Support Website
This is a waiver program to expand home and community-based services that does not take parental or sibling income into consideration. The website explains services provided and the application process.

Catastrophic Illness in Children Relief Fund

Visit Catastrophic Illness in Children Relief Fund Website
1-800-335-FUND (3863)
This fund can provide financial assistance.  If medical expenses are more than 10% of your income, this fund may reimburse you for most of the expenses. This has come in useful for families who need a converted van. The website lists qualifications and application process.

Medical Personal Care Assistant Program (PCA)

Visit Medical Personal Care Assistant Program (PCA) Website
This is an optional state assistance program offered to Medicaid recipients who need assistance with aspects of daily living. In order to qualify, recipients must be on Medicaid plan A or G, have a doctor’s order and have a documented need for assistance. PCA services must be preauthorized by the Division of Disability Services.

State Health Insurance Assistance Program (SHIP) 

Visit State Health Insurance Assistance Program (SHIP)
State Health Insurance Assistance Program (SHIP) SHIP provides free help to New Jersey Medicare beneficiaries who have problems with their health insurance such as questions about benefits, claims and supplement policies (known as Medigaps). Counselors provide assistance in dealing with claims and in evaluating health insurance options.  Counseling is free of charge.

Early Intervention

New Jersey Early Intervention System (NJEIS)

Visit New Jersey Early Intervention System (NJEIS) Website
1-888-653-4463
NJEIS implements services for infants and toddlers

Education

Department of Public Education

1-609-292-0147
Department of Public Education the DOE ensures that students with disabilities receive appropriate educational services to enable them to achieve the same goals established for all students.

Conservatorship

Bureau of Guardianship Services

Visit Bureau of Guardianship Services Website
The Bureau of Guardianship Services at the Department of Human Services can help with guardianship.

Transition to Adult Services

Statewide Parent Advocacy Network (SPAN)

Visit Statewide Parent Advocacy Network (SPAN) Website
SPAN provides information, training and technical assistance for youth, their families and other professionals to support informed and effective transition from school to adult life. Services include workshops, publications, and technical assistance for students with an IEP or 504 accommodation plans.

Planning for Adult Life

Visit Planning for Adult Life Website
Planning for Adult Life Planning for Adult Life is a Division of a Developmental Disabilities-funded initiative for New Jersey youth with intellectual and developmental disabilities ages 16-21 and their families, to assist them in preparing for the transition to adulthood.

New Jersey Department of Education

Visit New Jersey Department of Education Website
1-609-292-0147
The DOE has transition resources. Transition is a formal process of long-range cooperative planning that will assist students with disabilities to successfully move from school into the adult world. The website contains information on understanding what to do, and how to do it. For additional assistance with transition issues, please contact Mr. Bob Haugh Robert.Haugh@doe.state.nj.us or Mr. Bill Freeman Bill.Freeman@doe.state.nj.us.

Handicap Placard

Motor Vehicle Commission (MVC)

Visit Motor Vehicle Commission (MVC) Website
1-609-292-6500
Motor Vehicle Commission (MVC) The MVC issues handicap placards. Complete the application, available online, have it signed by a physician, and either bring or mail to MVC office.

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

Medical Professionals

Rocking Horse Rehab

Visit Rocking Horse Rehab Website
Rocking Horse is a pediatric rehabilitation and family wellness center specializing in equine assisted therapies along with alternative and traditional therapeutic programs. It is located in West Orange, NJ.

Special Strides

Visit Special Strides Website
Special Strides is a non-profit organization devoted to improving the lives of individuals with special needs. It is located in Monroe, NJ.

Bergen Pediatric Therapy

Visit Bergen Pediatric Therapy Website
Bergen Pediatric Therapy Bergen provides pediatric aquatic therapy in a heated, saltwater pool. All activities are supervised by a licensed physical therapist or occupational therapist. Therapy occurs with 1:1 ratio to provide maximum support. It is located in Westwood, NJ.

Recreation

Casino Pier

Visit Casino Pier Website
Casino Pier is located in Seaside Heights, NJ. Visit Guest Relations upon entering the park to speak with a representative regarding specific needs while visiting the park.

Wheelchair Accessible Beaches

View Wheelchair Accessible Beaches
This site lists accessible beaches. Many have specific sand wheelchairs available on a first come, first serve basis for free daily use. Call ahead to find out if beach wheelchairs are available.

Sahara Sam's Oasis

View Sahara Sam’s Oasis Website
Sahara Sam’s Oasis hosts Special Needs Events in cooperation with the SAMBULANCE Safety Squad. Special Evenings at Sam’s, or S.E.A.S., are offered to the community at a significantly reduced rate and are designed with the unique challenges of special needs individuals in mind.

Additional Resources

New Jersey Rettsyndrome.org Facebook

Click and ask to join.

Statewide Parent Advocacy Network (SPAN)

Visit Statewide Parent Advocacy Network (SPAN) Website
SPAN is an independent 501(c)3 organization committed to empowering families as advocates and partners in improving education and health outcomes for infants, toddlers, children and youth.

Disability Rights New Jersey (DRNJ)

Visit Disability Rights New Jersey (DRNJ) Website
DRNJ is a private, non-profit organization established to advise and assist individuals with disabilities.

ARC of New Jersey

Visit ARC of New Jersey Website
The ARC is New Jersey’s largest organization advocating for and assisting individuals with disabilities and their families. There are local county chapters located throughout the state.