The Beginning of a New Era: Let’s Remove Barriers to Home and Community-Based Services

The following message is from Peter Burns, CEO of The Arc of The United States. Peter is sharing groundbreaking news of the draft legislation for Home and Community Based Services (HCBS). To become reality, we will all need to get involved and advocate for this much needed change that would make services available to all who qualify without ever being placed on a waiting list! Stay tuned as The Arc of East Central Iowa develops our call to action. We hope we can count on each of you to help make this draft bill become a reality.

Home should be in the community, with the services to thrive. After years of advocacy by The Arc and our advocates, Congress released draft legislation to make access to home and community-based services (HCBS) a reality for all. No more waiting lists or being tied to one state; this pivotal piece of legislation will be transformative.  

For decades, many people with intellectual and developmental disabilities (IDD) have been warehoused and lived segregated lives in institutions. Even today, these institutions still exist in 36 states and are using state and federal dollars. Meanwhile, people with disabilities and families want access to home and community-based services, or HCBS, and there’s not enough of these services to meet the desperate need across the country.  

Instead of putting community first, our nation has had it backwards – and this week marks the beginning of the end of this outdated approach.  

COVID-19 has put a glaring spotlight on the health dangers facing people living in nursing homes and institutions. Behind closed doors, we don’t even know how many people with disabilities and support staff have died or become ill from this virus. What we do know is that this collective experience has proven that a life in the community is not only what people want, but it is safer.  

On Tuesday, Members of Congress unveiled a critical bill developed with The Arc and other disability and aging advocates, that will fundamentally change how people with IDD and older adults live their lives.  

The Home and Community-Based Services Access Act (HAA) is a bill that will:  

  • Eliminate waiting lists. Today, there are nearly 850,000 people on waiting lists across the country. And often, people are waiting years—sometimes decades—to access these services.  
  • Increase federal Medicaid funding to states for HCBS and provide additional grant funding to help states to build the capacity that they need.  
  • Address the decades-long direct support professional workforce crisis and ensure that the workers who support people with disabilities and older adults—who are disproportionately women of color—are paid a family sustaining wage.  
  • Allow people with disabilities and their families to move from state to state and still be able to access crucial HCBS services, and create a set of services that all states must provide.  

The Arc has been leading behind the scenes for years to make this bill a reality—and you have helped too! With every call to support HCBS funding and email to show why a life in the community is important, you have helped with the creation of this landmark legislation. All our efforts have led to this day.  

We have a lot of work ahead of us to get this federal legislation finalized, passed, and ultimately signed into law. Just days ago, we got a reprieve from Congress, a year-long significant boost in funding for our current HCBS system. That happened because of YOU. But after a year, we go back to the same broken system, unless we act now!  

We have an opportunity to transform the system for generations to come. To get it right. To put community first.  

It’s a new era, and The Arc is once again leading toward the future. Learn more about this critical issue and share your story. We need your momentum to carry us forward into a new era.

Peter Berns
Chief Executive Officer
The Arc of the United States

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