Specialized Volunteer Family Empowerment Representatives
Family Empowerment Representatives provide emotional support, information and resources to families affected by Rett syndrome. Several of our reps specialize in areas listed below:
New Families: Mary Joyce Griffin, Rettsyndrome.org, mgriffinrettsyndrome.org1-800-818-7388
Adults with Rett syndrome: Judy and Clifford Fry, email@example.com
Grandparents: Glenna Gallagher, firstname.lastname@example.org 1-512-694-5908
Spanish Speaking Families: Yazmin Garcia, email@example.com 1-708-972-4484
All resources are parent-suggested. To suggest your own, please email the information to firstname.lastname@example.org.
Online Communities & Social Media
There are many services and supports available to your child, and accessing them sooner than later could help her development tremendously. Take advantage of them. Follow-up and be persistent. Ask for advice from other parents if you are running into walls, but don't give up. Eligibility for many of these are based on her diagnosis, not your status or income
Medicaid and the Children's Health Insurance Program (CHIP) provide health coverage to children with disabilities. The federal government sets minimum guidelines for Medicaid eligibility but states can choose to expand coverage beyond the minimum threshold.
Social Security programs serve as vital financial protection for many. The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources. Under the age of 18 years, qualification is based on family income. The Compassionate Allowances List (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants with specific conditions like Rett syndrome. It is not a separate program from SSA's two disability programs, SSDI and SSI.
The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.
ep (Exceptional Parent) is a 44 year old, award winning publishing and communications company. ep provides practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied healthcare professionals and educated professionals who are involved in their care and development
Research other community resources and philanthropy groups such Rotary International, Lion's Club, Kiwani's and Make-A-Wish to help fund conferences, medical appointments, therapies, equipment, transportation, housing and modifications.
Smart911 is a free online resource that allows you to create a Safety Profile for your household which will proactively provide details that 9-1-1 may need in order to send help in the event of an emergency. It is a service used by many (but not all) public safety agencies across the country to enhance communication and response for their community.
Medical Baseline Discount for Gas and Electric
Many have a physician form to complete that will allow you a minimum baseline usage without charge or offer discounts based on your child's inability to regulate her temperature, therefore requiring extra heating or air-conditioning year-round. Also, if a Speech Generating Device, or other Durable Medical Equipment requiring power is in the home, you may qualify for bi-pass consideration during Brown-Outs. Please check with your own gas and electric provider.
Medical & Therapy (National)
There are many ways that our children can communicate beyond speech. Seek a communication assessment for your child, and try out a variety of devices through these centers.
Tobii Technology uses eye gaze technology to allow a nonverbal individual to communicate.
PRC uses eye gaze technology to allow nonverbal individuals to communicate.
Autism Resources for Parents – The Ultimate New Guide
Autism Parenting Magazine provides expert advice from respected professionals about autism and offers solutions for families.
Wills & Trusts
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 activities of daily living (the "conservatee"). Families should check with their child's Regional Center, high school and/or your county Superior Court Probate Office for information on low/no cost Self Help Clinics. This process should be started approximately 6 months before the 18th birthday.
Plan for a protected future for your child with Rett syndrome. This requires a thorough understanding of financial and legal planning, guardianship, and documenting your vision of how and where she will live, learn and thrive in the event anything happens to you. This is easy to defer with day-to-day priorities, but it's important, and easier to accomplish with the help of a knowledgeable experienced professional.
Rettsyndrome.org Professional Advisor: Mary Anne Ehlert, Protected Tomorrows. Protected Tomorrows, Inc. is an advocacy firm that enhances the lives of people with special needs through a comprehensive life planning process.
The Special Needs Alliance is a national, non-profit organization committed to helping individuals with disabilities, their families and the professionals who serve them. Many of our member attorneys have family members with special needs; all of them work regularly with public benefits, guardianships/conservatorships, planning for disabilities and special education issues.
The Academy of Special Needs Planners consists of special needs planning professionals such as attorneys, financial planners and trust officers that assists them in providing the highest quality service and advice to persons with special needs and to their families.
Ways to Advocate
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
There are many ways to find someone who will help be your expert at the negotiating table if needed. There are federally funded agencies, and often the best source for a particular type of Advocate is by word of mouth - ask other special needs parents in your community.
Google Maps has made their app wheelchair and accessibility friendly. Click above for more information about this new app.
Disability Resources for College Students guide
LearnHowToBecome.org is a comprehensive career resource with a mission to help students and aspiring professionals understand what it takes to land their perfect career. This resource guide for students with disabilities contains information for students who are effected by a variety of disabilities.
Retail Savings Guide for People with Disabilities
This guide provides a detailed walkthrough of discounts and special offers for individuals with disabilities.
Kids Wish Network
Kids Wish Network grants wishes for children who are between the ages of 3 and 18 and have a life-threatening illness. Anyone can refer a child, including a family member, friend , nurse, doctor, or social worker. In addition, the organization's "Hero of the Month" program was developed to honor children also between the ages of 3 and 18 who have overcome life-altering circumstances and have stayed in or been treated at one of our Hero pediatric care facilities.