This resource is the first of several that ASAN is developing to equip self-advocates to participate in important conversations about our lives and the services we rely on. The ACA Toolkit has three parts:
- Part 1: A Self-Advocate’s Guide to the Affordable Care Act
Part 2: What’s the Problem with Repeal and Delay?
Part 3: The Affordable Care Act: What Can I Do?
The health care system in America is a complicated topic, one we could be talking about for months or years. The Affordable Care Act Toolkit for Self-Advocates explains in plain language all the different pieces of the ACA, what the proposed changes are, and what the impact of repealing it would be.
This guide helps people with disabilities understand decision-making laws. You will learn about different kinds of support you can use to make choices. You will also learn about how people in different countries have changed their laws to help people with disabilities make our own choices. Freedom to make our own choices is a human right.
The toolkit comes in two forms, with each form tailored to a different audience:
- Our Easy Read Edition. The Easy Read version is divided into five parts, each containing one subject discussed in the toolkit: Supported decision-making, guardianship, the Convention on the Rights of People with Disabilities, the state of the law on guardianship and supported decision-making in multiple countries, and the glossary explaining the terms we use in the toolkit.
- A Plain-Text or Families Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics.
ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help combat disability-based discrimination in organ transplantation.As ASAN found in our 2013 report, when people with intellectual and developmental disabilities need an organ transplant to treat a life-threatening condition, they frequently face barriers to receiving this lifesaving care. Doctors and transplant centers may refuse to approve organ transplants for people with disabilities who might need help in order to follow complicated post-transplant treatment plans. Others may refuse to approve transplants for people with disabilities based on the belief that, when deciding who should receive an organ transplant, people without disabilities should have a higher priority. ASAN’s toolkit on ending discrimination in organ transplantation provides resources for advocacy both on an individual and a system-wide basis.
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. As ASAN found in our 2013 report, youth with intellectual and developmental disabilities face a variety of barriers to accessing and managing their health care when they reach adulthood. Youth may no longer have access to the same source of health coverage that they had before they turned 18. They may have difficulty finding adult-oriented health care providers who understand their health care and communication needs. And they may not get the supports they need in order to understand their health care options and make decisions for themselves. ASAN’s toolkit on health care and the transition to adulthood provides resources for advocacy both on an individual and a system-wide basis.
Home and community-based services are an important source of support for many people with disabilities who need help to live in the community. But so far, many of these services have been provided in restrictive or group settings, instead of people’s own homes, communities, or integrated workplaces. In January, the Centers for Medicare and Medicaid Services (CMS) announced a new rule that may help people get the services they need in truly integrated settings. The new rule sets forth standards for the settings where people receive home and community-based services, including standards for privacy, choice, integration, and access to jobs in the community. Each state must write a five-year plan for how it will change its home and community-based services programs to meet these new standards. This toolkit is designed to help advocates shape their state plan to ensure that people with disabilities receive Medicaid-funded Home and Community-Based Services in integrated settings that offer full access to the community.
The Autistic Self Advocacy Network is in the process of developing a series of resources for autistic people, our families, providers, and health plans on coverage for autism-related services. These services can include developmental approaches regarding social communication, sensory integration, emotional regulation, and adaptive skills. Until now, much advocacy for coverage of “autism interventions” has focused on purely behavioral approaches, like Applied Behavioral Analysis (ABA). These interventions can be inappropriate or even harmful, and exclusive focus on coverage for behavioral interventions can result in limited access to evidence-based and emerging models that focus on improving relationships, communication skills, and development of skills that are meaningful to individuals’ quality of life. Fortunately, laws governing health coverage permit access to a wide range of interventions. These laws vary by state and by source of coverage – for example, Medicaid or private health insurance.