Helpful tools and resources for families and advocates.


Some quick tips to becoming an advocate

  • Focus your energy
    • Being an advocate can be an emotional experience
    • Reserve your energy to further your cause
  • Be assertive, not aggressive
  • Dont focus solely on the present
    • Consider the long-term goals and the person’s future.
  • Identify the problems
    • Ask yourself the question, “What exactly do I want?”
  • Brainstorm possible solutions
    • Which ones are realistic?
  • Ask Questions
    • Then listen carefully to the answers.
  • Take a break
    • It is okay to take a break if you are feeling overwhelmed or confused.
  • Do your research
    • Know what you are talking about. Gather information on your topic, the disability, how a system works, how decisions are made and who makes them, your rights, and develop a list of resources
  • Bring a friend
    • When you attend meetings bring someone with you for support or as an advocate.
  • Organize your information
    • Get a spiral notebook and file your information.
  • Document
    • Write down all your phone conversations, and take notes during meetings in your book.
    • Write down the names of people in attendance and what they stated.
  • Write letters
    • Follow up with a letter stating what decisions were made and to clarify problems.
  • Thank them for their time
    • Remember everyone’s time is precious, so it is important to be appreciative.
  • Plan for the Future
    • What are your long-term goals?
  • Share your story
    • Tell us about your experience.

Learn more about being an advocate.


Below are a few very helpful links for siblings.


The Red Book: Serves as a general reference source about the employment-related provisions of Social Security Disability Insurance and the Supplemental Security Income Programs for educators, advocates, rehabilitation professionals, and counselors who serve people with disabilities. 

The Gold Book (2013 Edition) is available on-line! Understanding the Office of Intellectual Disability Programs in Pennsylvania: Intellectual Disability and Autism Services, “The Gold Book,” is the revised and updated manual that introduces you to the Intellectual Disability system and Autism Services. You’ll learn how to register, what the waivers are, different service models and what to do if you have a problem.
Also featured: commonly needed forms; lists of resources, contacts, and advocacy organizations; and a glossary of terms.DOWNLOAD – Understanding the Office of Developmental Programs in Pennsylvania: Intellectual Disability and Autism Services: Word: 1.38MB | PDF: 4.15MBNOTE: These are large files. High-speed Internet connection recommended.
Descarger: Entendiendo la Oficina de Programas Para el Desarrollo en Pensilvania: servicios para Discapacidad intelectual y Autismo
Entendiendo… Word: 8.39MB Entendiendo… PDF: 7.97MB 
Philadelphia Special Needs Consortium Participant Directory 2014
Click here to download pdfIntellectual disability Services (IDS). A Directory for people with disabilities, their families and professionals. Click here to download pdf.

It’s Fun to Have Fun in SE PA Resource Booklet 2009Click here to download pdf


25 Commandments for Disability Inclusion and Universal Accessibility Before, During and After Disasters