Pennsylvania Resources

Family Empowerment Representatives | Treatment and Research Centers | PA 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

Maureen Charamella, volunteer Family Empowerment Representative, Springfield   Maureen.charamella@yahoo.com1-610-766-2930

Julie Peden, volunteer Family Empowerment Representative, Centerville   jpedenfive@gmail.com1-814-657-5005


Treatment and Research Centers


Clinics

Children's Hospital of Philadelphia

 1-267-426-0122   

Children's Hospital has pediatric neurologists with advanced training and experience in treating the full spectrum of pediatric neurologic disorders.

Clinical Trials

Please contact the trial site for current enrollment status.

 

Natural History Study

 

Children's Hospital of Philadelphia

 1-267-426-5171

For information about the Natural History Study contact Casey Gorman at GormanC@email.chop.edu or Holly Dubbs at  dubbsh@email.chop.edu or call.

-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: The Ritz-Carlton, Philadelphia, Residence Inn Philadelphia Center City, Courtyard Philadelphia Downtown

   

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. 

Children's Hospital of Philadelphia

 1-215-590-5106

For information contact Samantha Hagopians hagopians@email.chop.edu.


State Agencies - Pennsylvania


 Local Service Agencies

Home and Community Services Information System (HCSIS)

HCSIS is a tool to locate services and providers. This directory is not comprehensive and does not necessarily reflect the availability of services. Use with your Supports Coordinator to determine which services may be best for your family.

Department of Human Services

The DHS County Assistance Office allows state residents seek assistance and services and is your point of contact with DHS.

Special Kids Network (SKN)

.   1-800-986-4550

SKN  helps children with special health care needs and disabilities get the services and support they require in order to develop to their full potential. They provide information on health care services and offer service coordination.  They have eight regional coordinators who work in communities to identify service gaps and address the unique challenges of service systems

The Bureau of Disability Determination (BDD)

BDD is the state agency that assists the Social Security Administration (SSA) in determining eligiblity for federal disability benefits.

Mental Health/Intellectual Disabilities (MH/ID)

 1-888-565-9435

County MH/ID program offices administer intellectual and developmental disability services. County MH/ID offices serve as a referral source, determine a person's eligibility for service funding and assign a supports coordinator. The supports coordinator will  help determine appropriate services, assist in applying for the Medicaid Home and Community Based Waiver Program and other services which require applications. 


Handicap Placard

PennDot

 1-800-932-4600

To apply for a handicap placard, fill out and notarize form MV-145A including a doctor's signature. Permanent placards are renewed in March and September of each year. You should receive a renewal approximately 60 days before expiration of the placard. Must have a disability as defined by PennDOT and be certified as having a disability by a physician.  


State Medicaid 

Pennsylvania Department of Human Services

DHS County Assistance Office allows state residents to seek assistance and a range of services for themselves and their families.

Person Family Directed Support Waiver

This waiver is directed at persons age 3 and older to assist them in living more independently in their homes and communities.

Infant, Toddler and Family Waiver

This waiver provides services to children from birth to age three who are in need of Early Intervention services.

PH-95 Loophole

PH-95 Loophole is a medical assistance program that helps severly disabled children (up to age 18) with medical costs not usually paid for by primary or secondary insurance.

Medical Assistance (Medicaid) Financial Eligibility Application

1-866-550-4355

The DHS application for Long Term Care, supports and services is available online.  

healthinsurance.org

Healthinsurance.org expains Medicaid in Pennsylvania.


Early Intervention

Pennsylvania Early Intervention Services

1-800-692-7288

Early Intervention provides supports and services for families with children birth to age 5 who have developmental delays and disabilities.


Education

Pennsylvania Department of Education

 1-800-879-2301

The Department of Education oversees special education. Help for families and advocates for children with special needs can be obtained by calling the Consult Line. 


Conservatorship

Conservatorship (called Guardianship in Pennsylvania) 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 with daily living. Check with your child's high school or your county Superior Court Probate Office for information. This process should start approximately 6 months before the 18th birthday.

Disability Rights PA

Disability Rights gives more information on guardianship.


Transition to Adult Services

Pennsylvania Secondary Transition Guide

This guide provides information on transitioning from school to adult based services.


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


Recreation

Knoebel's

Knoebel's is located in Elysburg. There is no admission to enter the park. Guests purchase tickets for the rides. They offer a wrist band that allows disabled guests to enter through the exit gates.

Sesame Place

Sesame Place is located in Langhorne. The Ride Accessibility Program allows  guests with disabilites to wait in a virtual line with a prescheduled boarding time.  Enroll in the Ride Accessibility Program at the Welcome Center.


More Parent Recommendations

Caregiver's Corner

Caregiver's Corner is designed to be a comprehensive listing of organizations, support groups, events, services and opportunities to empower parents and caregivers of children with disabilities. Caregiver’s Corner is part of the Colleran Firm’s ongoing commitment to assist parents who are raising special needs children. The Colleran Firm, based in Philadelphia, has provided compassionate legal assistance to many families of children with disabilities.

Pennsylvania Assistive Technology

This site has links to products and equipment that aid in the assistance of children and adults with disabilities.

The PEAL Center

This is an organization of parents of children with special health care needs/disabilities reaching out to assist families, professionals and others who work with children with disabilities/special health care needs.

Disability Rights Network of Pennsylvania

This is a private, non profit organization designated as the federally mandated organization to advance and protect civil rights of individuals with disabilities.