Advocacy Information for Parents and Caregivers
Advocacy information for parents and caregivers of individuals with autism.
Home- and Community-Based Services (HCBS) Advocacy
The HCBS Advocacy Coalition works collaboratively to help states fully comply with the HCBS Settings Rules and assist stakeholders in understanding the rule. These efforts are essential to achieving systems change that results in truly integrated settings, where people with disabilities can live, work, receive services, and fully engage in community life.
The website contains a variety of resources around the HCBS Settings rule, including webinars, explainer videos and state-specific resources.
Navigating Health Services
Although receiving health care is a universal experience, each of us have highly specific treatment and intervention needs. As you support an individual with autism in navigating health services, you can ensure your support is person-centered by fostering self-awareness of his or her medical needs, teaching skills to manage health care, and promoting advocacy for medical needs. The quick assessment provided below can help you learn more about the person you support.
Self-Awareness of Medical Needs
Does the person you support know…
- His or her short-term or ongoing medical needs?
- His or her prescription medications, their purpose, frequency and dosage amounts?
- How to identify his or her symptoms and communicate them to others?
- When he is experiencing a medical emergency and how to get care?
- The difference between an emergency medical situation and a non-emergency medical situation?
- What to ask or share with the physician during an office or hospital visit?
Does the person you support know…
- His or her doctor(s)’ contact information or how to access it?
- How to schedule an appointment?
- How to get to an appointment?
- How to access and provide insurance information at a medical appointment or at the pharmacy?
- How to fill a prescription?
- How to get medical care if his or her doctor’s office is closed?
- How to keep a file of medical records at home or digitally.
- How to fill out forms at a doctor’s office (demographic, insurance, HIPAA and medical history)?
Does the person you support know…
- How to get referrals for other providers or how to coordinate with more than one provider?
- How to request accommodations in a medical environment?
- How to request a waiver form to allow a support person or medical advocate to join him at appointments?
What You Can Do Now
- After you have learned more about the individual’s self-awareness of her health needs, identify a concrete, achievable strategy you can teach her in order to become more capable in this arena of self-care.
- Repeat the activity above focusing on an organizational skill.
- Repeat the activity above focusing on an advocacy skill
Temple University Collaborative on Community Inclusion: Self-Directed Care
This webpage includes the following resources:
- 2019 Self-Directed Care Calendar
- A Guide to Creating Self-directed Care Programming
- Advanced Self Advocacy Plan – A Guidebook
- Advanced Self Advocacy Plan – A Planning Document
- In The Driver’s Seat: A Guide to Self-Directed Mental Health Care
- Psychiatric Advance Directives: Pros, Cons, and Next Steps
- What is Self-directed Care?
- Making Self Directed Care a Reality
Affordable Care Act Toolkit for Self-Advocates
Information and resources for self-advocates with autism:
The Affordable Care Act (ACA) made it easier to get health insurance for all Americans, including those with disabilities, but the ACA can be difficult to understand and navigate. As a result, Autistic Self Advocacy Network (ASAN) has developed a plain language Affordable Care Act Toolkit for Self-Advocates, part of which was funded by the Special Hope Foundation.
The ACA Toolkit has three parts:
- A self-advocates guide to the Affordable Care Act
- Problems with repeal and delay
- The Affordable Care Act: What can I do?
This toolkit attempts to help advocates understand and participate in these important conversations.
Toolbox for Self-Advocates:
Right now, many people are getting involved in political advocacy for the first time. People are going to town hall meetings and making phone calls to their members of Congress. They’re writing letters and using social media to organize advocacy groups. This new wave of political advocacy is incredible. And people with disabilities need to be a part of that.
These civic engagement toolkits, produced by ASAN, that focus on the basics of civic engagement for self-advocates. These toolkits focus on the basics of civic engagement. Civic engagement means actively participating in our democracy.
ASAN Toolkit on Health Care and the Transition to Adulthood
Tips for transitioning into adulthood:
The Autistic Self Advocacy Network (ASAN) has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help youth with disabilities manage their own health care as they transition to adulthood.
The Transition to Adulthood is a review of research, policy, and next steps, discusses the range of challenges facing youth with intellectual and developmental disabilities as they approach adulthood, including potential loss of health care coverage, barriers to obtaining adult-oriented care, and lack of support in making health care decisions. It outlines several policy recommendations to eliminate these barriers, including expanding access to income-based Medicaid coverage, increased education and awareness of the importance of transition and decision-making supports, and increased research on best practices in transition planning.
This toolkit also provides people with disabilities and their families with information on how to choose a source of health care coverage, create a health care support network, integrate health care transition goals into their educational plans, and manage their health care. It includes useful guides and worksheets for keeping track of health care records, making doctor’s appointments, and talking to doctors about health concerns.
|Navigating Health Services
|Although receiving health care is a universal experience, each of us have highly specific treatment and intervention needs. As you support an individual with autism in navigating health services, you can ensure your support is person-centered by fostering self-awareness of his or her medical needs, teaching skills to manage health care, and promoting advocacy for medical needs. The quick assessment provided below can help you learn more about the person you support.
|Download file: Navigating Health Services
This information was developed by the Autism Services, Education, Resources, and Training Collaborative (ASERT). For more information, please contact ASERT at 877-231-4244 or info@PAautism.org. ASERT is funded by the Bureau of Supports for Autism and Special Populations, PA Department of Human Services.