Our Fight for Disability Rights Continues in Washington, DC

Every year, I attend the annual conference of the National Council on Independent Living (NCIL) in Washington, DC with many of my peers in the disability rights advocacy community. We network, align on a robust public policy agenda, visit our Senators and Congressmen and discuss emerging trends in the disability community.

This year, all eyes were focused on a few key pieces of legislation. Here is a list and brief description of what I advocated for at this year’s conference:

ADA Education and Reform Act, HR 620

People affected: Entire disability community

Summary: This act reduces the impetus for businesses to comply with the ADA by allowing more time for compliance and requiring disabled people to bring complaints, making it a hassle to get compliance.

Why I advocate for it: Millions of Americans deserve the right to be accommodated in businesses and public  places around the country. The ADA has been in place 28 years. There is no excuse for a business to require extra time to comply.

Disability Integration Act (DIA)

People affected: Disabled people at risk of institutionalization who desire to live independently in their own communities, and who need appropriate services and supports in order to do so.

Summary: If passed, this bill would enable a person with a disability to have the right to choose to live in their own community, and access to long term services and supports needed every day to avoid being placed in a nursing home.

Why I advocate for it:  People with disabilities should have the right to live independently with all the support they need to live a quality life and avoid being placed in a nursing home.

Money Follows the Person (MFP) Rebalancing Demonstration Grant

People affected: People with disabilities who want to transition from nursing homes into community living.

Summary: This grant helps states rebalance their Medicaid long-term care systems funding by routing the money used to care for persons in nursing homes and funneling into their long-term support services, enabling them to live independently in their communities.

Why I advocate for it: Disabled people have access to resources and independent living personnel to assist them to make the transition to living in their communities and also have some funds to purchase furniture, make accessibility  modifications and pay first month’s rent in order to get started living in their own house or apartment.

Medicaid work disincentives reform

People affected: People with disabilities who are qualified to work, but are hampered by income limits.

Summary: Medicaid currently has limits on income.  If a person is qualified to work but earns over those limits, they will lose their health insurance under Medicaid.  For those who also need personal assistance services (attendants) they will also lose those services.  This means that disabled people either won’t go to work or will work at jobs they are over qualified for or work part time.  Either way, they suffer from a life of forced poverty or working under their potential because they cannot risk losing healthcare or attendant services.

Why I advocate for it: People with disabilities who want to work and advance in their careers shouldn’t have to choose between a career or long-term services and supports. More companies are developing diversity and inclusion initiatives to welcome people with disabilities in the workplace, but run into Medicaid barriers when trying to promote employees with disabilities. We now have increased opportunities and access points for people with disabilities to enter the job market.  We’ve had enough of living in poverty!

Many other issues were identified at the conference, and NCIL compiled a comprehensive list of the legislative bills that need our advocacy. These can be found at https://www.ncil.org/wp-content/uploads/2018/06/Policy-Priorities-July-2018.pdf.

My attendance at the NCIL conference, which coincided with the 28th ADA anniversary, has invigorated my commitment to disability rights. Seeing my peers and fellow advocates continue the fight for disability rights in our nation’s capital proves that people with disabilities make the world a better place. It’s time to interrupt the conversation and start talking disability.


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