Home Is in the Community With the Services to Thrive
People with disabilities and their families want access to life in the community—to be able to live as independently as possible, no matter the level of support necessary to make that happen. But when they try to find what they need, too often the system fails them.
Medicaid home and community-based services (HCBS) provide support to people who need assistance with everyday activities, like bathing, getting dressed, making meals, and so much more. The problem is there isn’t enough funding in the Medicaid program to support everyone who needs it. This means nearly 700,000 people are stuck on waiting lists, and many live segregated lives in the archaic institutions that still exist in 33 states. Institutions are large, often crowded places that limit people and their choices and force them to live away from their family and friends without access to the care needed to live in their own homes and communities.
Tell Congress: Care Can’t Wait!
Congress has the power to make life in the community possible for all! Tell your members of Congress to provide more funding for HCBS by passing legislation such as the HCBS Relief Act.
It’s time to make Medicaid funding go where people want to be – in the community.
Stuck in the Past With Institutions
- Segregating people from society, family, friends
- Limiting choices about day and routine
- Decades of documented abuse, neglect
- Warehousing people out of sight is a loss for us all
- High cost to taxpayers to maintain and staff
- 33 states still operate archaic institutions
We Want a Life in the Community
- Living near family and friends provides a rich life experience
- Open doors to contributing in the workplace and community
- Treat people with disabilities with respect and dignity
- Individual supports based on a person’s needs lead to a better life
- Less expensive on average to provide
Our outdated system leaves nearly 700,000 people on waiting lists for an average of 4–5 years—often longer
The current Medicaid system is set up to always pay for nursing homes and institutions, but home and community-based services
are “optional.” That is why people with disabilities are often stuck waiting for years to access the services they need.
Every day….
- People with disabilities are waiting for their lives to start and often going without the supports they need to achieve their goals.
- Families that want a different life than an institution or nursing home are forced to navigate a patchwork system of supports with waits and no guarantees.
- Family members are often forced to either quit or limit their job choices to provide care due to lack of services.
- People who finally receive services are stuck in one state, because their services aren’t transferable across state lines.
Hear About HCBS From People With Disabilities and Families
Follow a manual added link
Barbara and Jake’s Story
What happens when families can’t find direct support staff
Follow a manual added link
Terri’s Story
One family’s experience navigating Medicaid
Follow a manual added link
Roy’s Story
The fight to keep his three adult sons out of institutions
Get the Facts
The following resources are provided in plain language:
A Self-Advocate’s Guide to Medicaid (Autistic Self Advocacy Network)
Long Term Supports & Services 101: PDF | Word Doc | PDF en español | Word en español (The Arc)
Why Congress Must Invest in HCBS: PDF | Word Doc | PDF en español | Word en español (The Arc)
The Direct Care Workforce: PDF | Word Doc | PDF en español | Word en español (The Arc)
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
