New York Resources

Family Empowerment Representatives Rep | Treatment and Research Centers | NY 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

Shirley Hurlburt, volunteer Family Empowerment Representative  cnyrettrep@gmail.com1-315-447-5200


Treatment and Research Centers


Clinics

Children's Hospital at Montefiore (CHAM)

 1-347-640-2671  1-718-920-4378

This is the only center for Rett syndrome in the tri-state area and is offered through the Division of Neurology.   rett@montefiore.org

 

Clinical Trials 

Please contact the trial site for current enrollment status.

 

Natural History Study

 

University of Rochester Medical Center 

 1-585-341-7500 Appointments      1-585-273-5688 NHS Information

The Child Neurology Clinic provides diagnosis and comprehensive care to children with any type of neurological disorder, including Rett syndrome. The clinic is located at Strong Memorial Hospital. Dr. Alexander Paciorkowski leads the NHS study.  For NHS information email alex_paciorkowski@urmc.rochester.edu.

Travel Assistance for NHS Sites

1-781-333-1593

Marriott is working on establishing discounts for hotel near our clinical trial sites.  For more information, contact Ashley Lucchese, Marriott Sales Executive Ashley.Lucchese@Marriott.com 

Nearby hotels include: Courtyard Rochester Brighton & Residence Inn Rochester West/Greece 

Other Clinical Trials

 

Biobanking of Rett Syndrome and Related Disorders

 

The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected.  This study will be conducted at the University of Rochester.  It is led by Alex Paciorkowski, MD, PhD. 

 


 State Agencies - New York


Local Service Agencies

 Office for People with Developmental Disabilities (OPWDD)

1-866-946-9733

OPWDD offers supports to children from birth to 21 who are OPWDD-eligible with a qualifying diagnosis. OPWDD services can be provided in addition to supports received through Early Intervention (EI), the education system, and the Office for Children and Family Services (OCFS).   

Child Health Plus

Child Health Plus is the state's health insurance plan for kids. Depending on your family’s income, your child may be eligible to join either Child Health Plus A (formerly Children’s Medicaid) or Child Health Plus B. Both are available through providers throughout the state.

Revenue Support Field Office (RSFO)

The RSFO develops and maintains benefits and entitlements for individuals served by OPWDD. There are nine RSFOs throughout New York State.

Department of Social Services (DSS)

County DSS administers publicly funded social services and cash assistance programs. Families who meet income and other criteria, may be able to receive a subsidy to offset some of their child care costs. Eligible individuals and those requesting coverage for community based long term care (CBLTC) services should apply with their County DSS office.


Handicap Placard

New York State Department of Motor Vehicles

The DMV requires that you obtain a doctor's signature or statement for the application.  The statement must describe the disabling condition and verify that the disability qualifies according to the law. Bring the form or statement to your issuing agency. There is no fee for a permit. The DMV does not issue the parking permits.


State Medicaid 

New York State Department of Health

The HCBS  waiver provides services that allow individuals to remain in their own home or live in a community setting. Illinois has nine HCBS waivers. Each waiver offers a different set of services. 

Medicaid.gov

This site lists all New York Medicaid waivers.

Medicaidwaiver.org

This site also lists New York Medicaid waivers.


Early Intervention

New York State Department of Health

1-518-473-7016

The Early Intervention Program (EIP) provides a variety of therapeutic and support services to children under three years of age who have a confirmed disability or established developmental delay. 

Early Intervention Official (EIO)

This designated official administers the local Early Intervention Program. Contact your EIO for information or to refer a child.


Education

Office of Special Education

1-718-935-2000

This department provides services and programs for students with disabilities.  


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency ("guardian" in the state of New York) is appointed by a court to be responsible for a person who needs assistance in activities of daily living. This process should be started approximately 6 months before the 18th birthday.

NYCourts.gov

NYCourts has online forms for guardianship.


Transition to Adult Services

Office for People with Developmental Disabilities (OPWDD)

1-866-946-9733

OPWDD works with the State Education Department, local school districts, and special education staff to assist students transitioning from school, and to help plan for the supports that will be needed in adult life. This process should start at age 15.  

New York State Education Department

1-518- 474-3852 

The Education Department has information on planning for transition for your child.  


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. Aleksandra Djukic

Dr. Djukic is Associate Professor of Neurology at Albert Einstein College of Medicine and is the Director of the Rett Syndrome Center.

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

Darien Lake

Located in Darien Center, most of the attractions are wheelchair accessible but do require a transfer from the wheelchair to the ride/attraction. See the Ride Accessibilility Guide for more information.

Trail Link

This site lists Wheelchair Accessible Trails in New York State.

Central Park Zoo

The Buffalo Zoo

 The zoo offers unique programs geared towards children with developmental disabilities.


More Parent Recommendations

New York IRSF Rett Syndrome Families Facebook Page

 Click and ask to join.

Parent Network of the Capital Region (PNCR) 

PNCR helps families and professionals understand education laws and regulations, parents' rights, and rights of students receiving special education services. PNCR also offers workshops for parents