Policy Advocacy Toolkits

“Our Rights Under Threat: What Dobbs v. Jackson Women’s Health Organization means for people with disabilities” takes the discussion a step further and examines the impact the decision will have on all of our rights. Our civil rights are woven together — and when one thread is pulled, other rights can unravel. The Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization will threaten not only our abortion rights, but many other civil rights as well. Dobbs is a case about the right to abortion. But the decision in Dobbs affects a lot of other rights as well. The decision in Dobbs affects rights like:

• The right to get married
• The right for adults to have sex
• The right to get birth control
• The right to have children

And more.

This toolkit will talk about why these rights are important, and why they are in danger after the Dobbs decision. It will also talk about what we can do to protect our rights.

It is more important than ever to make sure autism research reflects what matters to all of us. Make your voice heard by submitting a comment to the Interagency Autism Coordinating Committee before each meeting! Learn more about the IACC, and how to submit a comment, with our new resource!

Bodily autonomy, privacy, and access to abortion all matter for people with disabilities. Now, an upcoming Supreme Court decision may threaten our rights. There is a lot of information about what is happening at the Supreme Court and how it affects our rights, but most of it is not accessible or easy to understand. “Our Bodies, Our Rights: What’s Going On at the Supreme Court?” explains the court case happening at the Supreme Court, and how it could affect abortion access and our right to privacy.

Telling your story is a great way to make a difference — and because it’s your story, there’s no one better to tell it! Our stories are powerful political tools, and we can use them to make real change. Hearing a real person talk about a policy problem gives policymakers a name and face to remember. Make sure they remember your story — and make the changes you want — with our toolkit, “Sharing Your Story For a Political Purpose.” 

Many people with disabilities rely on long-term supports and services (LTSS)—like job coaches, transportation help, and in-home helpers—to live independently. Managed care is one of the ways that states can run their LTSS programs. When it’s done right, managed LTSS can help people move out of institutions and get better support in the community. But when it’s done wrong, people who rely on these supports and services will be negatively affected. Many more states are starting to make plans to switch to managed LTSS programs—and we can help make sure those programs work for us!

Our newest toolkit, A Self-Advocate’s Guide to Managed Long-Term Support Services, is an easy-to-understand guide to what managed LTSS is and how you can make sure your state’s MLTSS program is designed with LTSS users in mind.

The MLTSS toolkit is available in two versions:

• Our Easy Read Edition. The Easy Read version is split into 4 parts. Each part has its own Words to Know section, and there is also a separate Words to Know part with all of the terms from every section. The Easy Read version uses pictures along with larger text, and has more white space.
• A Plain Language Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics.

Institutions: the Old, The New, and What We Should Do, focuses on the history of institutions from the 19th century to the present, and what we can do to make community living possible for everyone. This toolkit answers important questions like:

• What is an institution? What is living in the community?
• When did institutions get made, and what were they like?
• What rules and laws help us live in the community?
• Why is living in the community better than living in institutions?
• What are new institutions like? How are they different from the old institutions? How are they the same?

Our second toolkit, The Cycle of Institutions, explains how institutions get opened, closed, remade, and opened again… and again. This toolkit answers important questions like:

• What is the cycle of institutions?
• What are state schools, ICFs, group homes, and intentional communities?
• How are these places different from institutions in the past? How are they the same?
• How can you tell that a facility is an institution?

Both toolkits are available in two formats:

• Our Easy Read Edition. The Easy Read version is split into parts, plus a separate section with additional links and a section with Words to Know. The Easy Read version uses pictures along with large text, and has more white space.
  
   
• A Plain Language Version without accompanying graphics. It includes a full glossary of all the words used in the toolkit.

The Americans with Disabilities Act (ADA) is a law that protects the rights of people with disabilities. The disability community fought hard to get the ADA passed into law, and we continue to fight hard to protect it. This year, we’re celebrating the 30th anniversary of the ADA becoming the law of the land. As part of our #ADA30 celebrations, we’re pleased to announce our new plain-language resource, “A Self-Advocate’s Guide to the Americans with Disabilities Act.” 

This toolkit will explain:

• What is the ADA?
• Why was the ADA made? 
• Why is the ADA important? 
• What are my rights from the ADA?
• Why are those rights important?
• How can I make sure I get my ADA rights?
• When does the ADA not work? 
• What is the ADA Amendments Act?
• Why is the ADA Amendments Act important?
• What is Olmstead? 
• Why is Olmstead important?
• What are people doing to try and make the ADA worse? 
• How can I help protect the ADA?

The ADA toolkit is available in two versions:

• Our Easy Read Edition. The Easy Read version is split into seven parts. Each part has its own Words to Know section, and there is also a separate Words to Know part with all of the terms from every section. The Easy Read version uses pictures along with larger text, and has more white space.
  
   
• A Plain Language Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics.

• How to request your ballot
  
   
• Important election dates in your state
  
   
• Who has to sign your ballot
  
   
• How to make sure your ballot is accepted

This plain language guide has two parts. The first part, “How to Vote by Mail“, gives an overview of how voting by mail works and answers many common questions about voting by mail. The information in this part of the guide applies broadly to every state, no matter where you live. The second part, “How to Vote by Mail: A State-by-State Guide“, has everything you need to know in order to vote by mail in your state.

The Americans with Disabilities Act (ADA) is a law that protects the rights of people with disabilities. The disability community fought hard to get the ADA passed into law, and we continue to fight hard to protect it. In 2020, we’re celebrating the 30th anniversary of the ADA becoming the law of the land. As part of our #ADA30 celebrations, we’re pleased to announce our new plain-language resource, “A Self-Advocate’s Guide to the Americans with Disabilities Act.”

Our new toolkit, which is available in Easy Read and Plain Language formats, explains what the ADA is and why it’s so important. This toolkit answers many important questions about the ADA, such as:

• Why was the ADA made? 
• What are my rights from the ADA?
• Why are those rights important?
• How can I make sure I get my ADA rights?
• How can I help protect the ADA?

The ADA toolkit is available in two versions:

• Our Easy Read Edition. The Easy Read version is split into seven parts. Each part has its own Words to Know section, and there is also a separate Words to Know part with all of the terms from every section. The Easy Read version uses pictures along with larger text, and has more white space.
  
  
   
• A Plain Language Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics.

Standing against anti-Black police violence is a critical part of fighting for disability rights. With protests against police violence going on all over the country, we wanted to provide an accessible resource for learning about what is happening — and how all of us can help create change.

Our new plain language booklet is called “What is Police Violence?: a plain language booklet about anti-Black racism, police violence, and what you can do to stop it”. We worked with the American Association of People with Disabilities and Green Mountain Self-Advocates to make it.

• Anti-Black racism and the police
• Police violence in the U.S.
• Police violence and disability
• What we can do about police violence

Understanding voting and how to know who to vote for is an important part of living in the community. People with disabilities deserve to understand how to vote. That’s where our new plain language voting toolkit comes in. The toolkit focuses on the process of voting, and understanding how to prepare to vote on election day. This toolkit answers questions many first time voters have, such as:

• What is voting?
• Why should I vote?
• What’s the difference between a primary election and a general election?
• How does the Electoral College work?
• How do I get ready to vote?
• How can I get disability accommodations when I vote?

Your Vote Counts is available in two versions:

• Our Easy Read Edition. The Easy Read version has three files: the main toolkit, a glossary of all the words used in the toolkit, and a section about voting laws in every state. The Easy Read version uses pictures along with large text, and has more white space.
  
   
• A Plain Language Version without accompanying graphics. It includes a full glossary of all the words used in the toolkit, and a separate part about voting laws in every state.

The Home and Community-Based Services Settings Rule, or HCBS Settings Rule, allows people with disabilities to access resources we need to live in the community. Learning about the rule is an important part of understanding our rights. That’s why we’re excited to announce a new plain language toolkit, all about the HCBS Settings Rule! This toolkit focuses on how the Home and Community-Based Services Settings Rule helps us live in the community. Community living means being able to live near people with and without disabilities, in a place where we can make our own decisions. This toolkit is available in two versions:

• Our Easy Read Edition. The Easy Read version is split into six parts. Each part has its own glossary, and there is also a separate glossary with all of the terms from every section. The Easy Read version uses pictures along with larger text, and has more white space.
  
  
   
• A Plain-Text Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics.

In May of 2018, the Community Living Policy Center (CLPC) asked ASAN to hold a self-advocate summit about community living. At the summit, autistic people talked about what living in the community means to us, and how we can help more people live in the community.

After the summit, we put together many different resources based on what the participants talked about and what we learned from them. Learn more about these resources and download them at the link.

Every year, the U.S. government makes a budget. The federal budget decides how much money to spend on important things like Medicaid, roads to drive on, good schools, clean water, services for people with disabilities, and much more. It’s important for self-advocates to understand how the federal budget gets made—so we can advocate for a budget that includes money for programs that help us. But the federal budget process is complicated and confusing, even to people who have worked in the government for a long time. That’s why we’re pleased to announce our newest plain language toolkit, Follow the Money: The U.S. Budget and You. This toolkit explains:

• What the federal budget is
• What taxes are
• What the budget process is
• What happens when the budget process doesn’t work
• What we can do to influence the federal budget

The Budget toolkit is available in two versions:

• Our Easy Read Edition. The Easy Read version is split into seven parts. Each part has its own glossary, and there is also a separate glossary with all of the terms from every section. The Easy Read version uses pictures along with larger text, and has more white space.
• A Plain-Text Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics. The Plain Text Version is available as one document, or in individual parts.

It’s important for self-advocates to understand employment policy and how things could be different—so that we can effectively advocate for an end to policies that hurt us, and for the adoption of policies that help us. That’s why we’re pleased to announce our latest plain language toolkit, Real Work For Real Pay: A Self-Advocate’s Guide to Employment Policy. This toolkit will explain:

• What Employment First is
• What sheltered workshops are
• What the minimum wage is
• The law that lets some companies pay disabled workers less than minimum wage
• How we can solve problems disabled people have with employment
• What work requirements are, and why they are a bad idea for people with disabilities

The Employment toolkit is available in two versions:

• Our Easy Read Edition. The Easy Read version is split into seven parts. Each part has its own glossary, and there is also a separate glossary with all of the terms from every section.The Easy Read version uses pictures along with larger text, and has more white space.
• A Plain-Text Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics.

Autistic people have the right to be safe and live independently in our communities. We also face significant threats to our safety, including higher rates of abuse, institutionalization, suicide, and police violence. Too often, autistic voices have been erased from conversations about autism and safety. That’s why ASAN is proud to announce the release of our Autism & Safety Toolkit – the first toolkit made by autistic self-advocates, focusing on safety issues that affect us and the tools to deal with them. This toolkit provides information about:

• Abuse and neglect
• Bullying
• Interactions with police
• Mental health
• Safely navigating the community

Medicaid is the biggest health care program in the country. It’s an important part of the United States health care system. But a lot of the information out there about Medicaid and attempts to change it can be difficult to understand and navigate. That’s why ASAN is proud to announce the release of our plain language resource “A Self-Advocate’s Guide to Medicaid.” This resource was developed in collaboration with the Autism Services, Education, Resources and Training Collaborative (ASERT), and with funding from the WITH Foundation. This resource is part of a series that ASAN is developing to equip self-advocates to participate in important conversations about our lives and the services we rely on. The Medicaid toolkit is available in two versions:

• Our Easy Read Edition. The Easy Read version is divided into six parts, each containing one subject discussed in the toolkit: Medicaid introduction and background, Who Can Get Medicaid?, What Does Medicaid Pay For?, Medicaid funding, What Could Happen to Medicaid?, and a summary and glossary explaining the terms we use in the toolkit. The Easy Read version uses pictures along with text, and has more white space.
• A Plain-Text Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics. The Plain Text Version is available as one document, or in individual parts.

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.That’s why we’re pleased to announce a new series of plain language toolkits. These toolkits focus on the basics of civic engagement. Civic engagement means actively participating in our democracy. In a democracy, regular people choose, or elect, who gets to be in government. The people we elect should listen to our concerns and advocate for us in the government. But when they don’t do that, we have the right to make our voices heard. In short, civic engagement means:

• learning about how the government works, and
• making sure that the people we elect to government listen to us.

The first toolkit is “They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected Officials.” This toolkit is about:

• who our elected officials are, and
• what strategies self-advocates can use to get our voices heard by the people we elect to represent us.

The Affordable Care Act (ACA) made it easier to get health insurance for all Americans, including those of us with disabilities. But a lot of the information out there about the ACA and attempts to repeal it can be difficult to understand and navigate. That’s why ASAN is proud to announce the release of our plain language Affordable Care Act Toolkit for Self-Advocates, part of which was funded by the WITH Foundation. This resource is part of a series 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.