New Jersey Resources

Family Empowerment Representatives | Treatment and Research Centers | NJ 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

Leslie Greenfield, volunteer Family Empowerment Representative, Freehold NJ  leslieg417@gmail.com1-732-462-8476


Treatment and Research Centers


Clinics & Clinical Trials

Center for Rett Syndrome at Montefiore

1-312-942-4036 

This center is offered by the Division of Child Neurology at The Children's Hospital at Montefiore (CHAM). This is the only center for Rett syndrome in the tri-state area.

 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 Medicaids.  All children and adults with insurance or Medicaid can have comprehensive genetic testing without any prior authorizations or out of pocket costs.


 State Agencies - New Jersey


Local Service Agencies

New Jersey Department of Health

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. 

SCHS Case Management Units

SCHS Case Managers work with the child’s parents and physician to evaluate the child’s strengths and needs. They develop an individual service plan for the child targeting medical, educational, developmental, social and economic needs. Case Management Units serve children of all ages.

Special Child Health Services Registry

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

This department provides services for adults, age 21 and older with intellectual and developmental disabilities.


Handicap Placard

Motor Vehicle Commission (MVC)

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. 


State Medicaid 

Department of Human Services

1-800-356-1561

Department of Human Services DHS lists Medicaid information and programs. 

Office of Home and Community Services

This site also lists information on Medicaid Waivers

Online New Jersey Medicaid Application

Managed Long Term Services and Support

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

1-800-335-FUND (3863)

This fund can provde 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) 

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) 

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)

1-888-653-4463

 NJEIS implements services for infants and toddlers with developmental delays or disabilities and their families. This is available birth through age 3. The application is available online.


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

At 18 all individuals reach the legal age of majority.  A guardian is defined as “a person or agency appointed by a court to act on behalf of an individual”. Establishing guardianship is a legal process and it should start  6 months before the 18th birthday.

Bureau of Guardianship Services 

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


Transition to Adult Services

New Jersey Department of Education

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

 Statewide Parent Advocacy Network (SPAN)

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 

Planning for Adult Life Planning for Adult Life is a Division of a Developmetal 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.


Parent Recommendations

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


 Medical Professionals

Dr. Alexsandra Djukic, MD, PhD

 Center for Rett Syndrome 


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

Rocking Horse Rehab

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

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

Bergen Pediatric Therapy Bergen provides pediatric aquatic therapy in a heated, salt water 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.


Legal Resources


Recreation

Casino Pier

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

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

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. 


More Parent Recommendations

New Jersey rettsyndrome.org Facebook

This page is private so - click and ask to join.

Statewide Parent Advocacy Network (SPAN)

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) 

DRNJ is a private, non profit organization established to advise and assist individuals with disabilities.

ARC of New Jersey

The ARC is New Jersey's largest organization advocating for and assisting individuals with disabilities and their families. There are local county chapters located throughtout the state.

ClinicalTrials.gov

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