Advocacy, Legal & Benefits

Medical symbol of the short staff entwined by two serpents surmounted by wings overlaying the legal scale of justice symbol over a purple background
Overview

Often we need extra help navigating the healthcare, personal care, education, and legal system. In this section, we are collecting the resources that can help with advocacy needs across the lifespan. 

Get the Facts
Stories
  • Stories
    Personal Care Through the Years
    Author David Stoner provides insight into his experience with Personal Care Attendants through the years as his needs and his family's needs have changed.
    Photograph of a young woman and young man wearing a graduation cap and gown in wheelchairs holding hands with five individuals standing up behind them. One individual is holding an infant.
  • Stories
    Not Less-Than. Never Less-Than.
    The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin...
    Mason Shrader on the Balance Beam being led by his coach
Support Tools
Personal Care Attendants

Personal Care Attendants can be an integral part of an individual with Cerebral Palsy's life. They can provide direct support services needed to help someone with the basic activities of daily living such as hygiene needs, preparing meals, or housekeeping to providing support in employment, transportation to and from appointments, help in school and so much more. The articles in this section are designed to assist you in finding and keeping a personal care attendant who can meet your needs. 

Understanding Benefits

Understanding disability benefits and appropriate ways for individuals with disabilities to save money or plan for the future, can be quite complicated. The resources in this section are designed to give an overview of some the available disability benefits and resources associated with them. 

  • Pink Piggy Bank with Penny's Scattered around
    What is an ABLE Account and Why is it so Special?
    In 2014 the Achieving a Better Life Experience Act was passed. The ABLE account is a tax-advantaged savings account for individuals with disabilities. The individual with the disability is the account owner and anyone can contribute to the account – the account beneficiary, family, friends, even a Special Needs Trust.
  • Illustration of a bank over a bluish purple background with the heading Get the Facts: Advantages of a Pooled trust
    Special Needs Trusts - Advantages of a Pooled Trust
    Setting up a Third Party-Special Needs trust as part of estate planning is essential if the individual with a disability is or may be eligible for means-tested government benefits. A properly set up Third Party Trust ensures that the funds left to the individual, whether through gift or inheritance, are not considered countable assets when applying for means tested benefits
  • Heading that says: Understanding Benefits: SSI and SSDI written over an image of money in an envelope with a calendar next to it.
    What's the Difference Between SSI and SSDI?
    Many people do not know the difference between SSI and SSDI. It can be very confusing for a family or individual to understand what is available, and whether they will qualify. Very often, the recipients and their families do not even know which benefits they are receiving. But it is important to understand some basic information about government benefits. This post will focus on the two most common government benefits and give you a brief overview of how they work.
Podcasts
Recommended Reading
Cathryn Gray
University of Michigan Student and Adaptive Track Athlete
Dr. Lisa Thornton, MD
Division Chief for Pediatric Rehabilitation Medicine at Sidra Hospital in Doha, Qatar.​​​​​​​
Dr. Nathalie Maitre, MD, PhD
Director of Early Development and Cerebral Palsy Research, Emory University School of Medicine and Children's Healthcare of Atlanta; Chief Science Officer and co-Founder SmallTalk