
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.
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Congressional Briefing for Cerebral Palsy On Thursday, March 24th, 2022, the Cerebral Palsy Foundation hosted the first ever Cerebral Palsy Congressional Briefing with a panel of physicians, patient and self advocates. -
Cerebral Palsy Research Act The bipartisan, Cerebral Palsy Research Act, is introduced by Congressman Steve Cohen of Tennessee. Read more here: -
The History of Research Advocacy in Cerebral Palsy March is National Cerebral Palsy Month in the United States and is an opportunity to highlight the history of cerebral palsy advocacy - where we’ve been, where we are currently, and the opportunities that are ahead.
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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. -
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...
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.
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Support Tools
Personal Care Attendant Job Description for an Adult -
Support Tools
Personal Care Attendant Job Description for Child/Teen -
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Support Tools
Sample Personal Care Attendant Employment Agreement
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.
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Special Needs Trusts - First Party or Third Party? A special needs trust is a written legal agreement that enables an individual with a disability to qualify or remain qualified for means tested government benefits, such as medicaid, SSI or even medicaid waivers. -
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. -
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 -
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.
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Podcast
Episode 8: Cerebral Palsy Health. Disability and Employment with Sarah Storck and David Stoner Individuals with disabilities have opportunities to work, receive employment training and coaching, benefits counseling and save money without losing means tested benefits. This podcast discusses...
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Recommended Reading
Supported Decision-Making: From Justice for Jenny to Justice for All How would you feel if you weren’t allowed to make decisions about your life? What if someone had the power to tell you where to live, who to spend time with, and what to do? What if that person had... -
Recommended Reading
Congressional Briefing for Cerebral Palsy On Thursday, March 24th, 2022, the Cerebral Palsy Foundation hosted the first ever Cerebral Palsy Congressional Briefing with a panel of physicians, patient and self advocates.