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It’s Personal for Us and You; Why Your Advocacy Matters

As lawmakers re-set priorities in the wake of Covid-19, your support is needed. Currently, government-funded services struggle to respond to people with IDD’s participation in the community.

Home- and Community-Based Services. This proposed $400 billion funding would increase access to services as well as long-overdue investment in the direct care workforce. We have a once-in-a-lifetime chance to modernize and strengthen the outdated infrastructure behind our nation’s disability services system, Medicaid. Make it count and ACT NOW to tell Congress to fund home and community-based services through the Better Care, Better Jobs Act — a historic investment in disability services! #CareCantWait #BetterCareBetterJobsNow

    • The #BuildBackBetter (BBB) package, which includes $150 billion in home- and community-based services (HCBS) funding and other I/DD priorities, has stalled. Please call (516) 739-3008 and tweet (@RepKathleenRice) TODAY to urge her to help advance the BBB package!
    • Participate in The Arc of the United States’ “Raise Our Voices for Care” campaign. Even if you can’t get to DC, your state capitol, or a local town hall, your story still matters and must be shared. The Arc’s story tool is easy to use. At the end of recess, The Arc will put all of those stories together to show the strength of all the voices rising up to support the $400 billion investment in Medicaid Home and Community-Based Services.
    • Click here to send an email to Sen. Schumer, Sen. Gillibrand, and your local congressional representative. Let them know you support this historic investment in home and community-based services.
    • Give your federal lawmakers a call. Find their contact information, here.
    • Share your support on social media tagging these lawmakers with #BetterCareBetterJobsAct #HCBS #CareIsEssential
    • Check out  the free webinar, “Better Care Better Jobs Act: What Grassroots Need to Know.” 
    • Check out a recent analysis of the act’s impact with state-level data included.

Increased Investment in DSP Workforce. 
BJ Stasio, SANYS president an disability advocate, recently launched the RiseUp campaign. BJ seeks to personally hand the governor a 10,000 signature petition to raise awareness toward increased investment in the direct care workforce. Sign the petition here.

Workforce Advocacy. Federal and state advocacy is underway addressing the recruitment and retention crisis facing providers of IDD supports and services. The Arc New York seeks support for the Better Care Better Jobs Act, the establishment of a Direct Support Professional (DSP) Standard Occupational Classification, and grant opportunities for the recruitment, retention and advancement of DSPs.

Overnight Visits and Reimbursements. People with disabilities who reside in group homes cannot be treated as hospital patients. But, that is what is happening. In May of 2021, providers are now only able to bill at half the established rate when a person with I/DD chooses to spend a night away from their home or if they are admitted into a hospital or rehabilitation center. After 96 days, the provider cannot receive ANY reimbursement if the person is not sleeping in their bed. This is different from a hospital. There is no way to fill this bed. This is their home. .  . This new policy is creating a grave impact on residential services, particularly on an agency’s ability to ensure sufficient staffing at each location. Due to these billing changes, the agency is now asking families to limit overnight stays which can result in reduction of family and community inclusion opportunities.

  • Send an email alerting Gov. Hochul and New York State’s Office for People With Developmental Disabilities on the importance of change.