Congress is in the process of deciding how much money to allocate for Medicaid Home and Community Based Services (HCBS) in the recently proposed $3.5 Trillion spending package, and it needs to hear from the disability community NOW! Medicaid HCBS has been grossly underfunded for decades, and the problems with the HCBS system have been exacerbated by the COVID-19 pandemic. We finally have a chance to make a significant investment in HCBS but we need to fight for it! Both President Biden’s American Jobs Plan and the Better Care Better Jobs Act (BCBJA) (S. 2210/H.R. 4131) proposed an unprecedented yet critically necessary $400 Billion investment in the infrastructure of Medicaid HCBS to provide much-needed funding for states to assist people with disabilities and their caregivers to access services, get off long waiting lists, receive better quality care, and to address the longstanding direct care workforce crisis. Despite the dire need for this funding and grassroots advocacy, this money is not part of the current bipartisan infrastructure bill that will be voted on shortly. Last week, the Senate Democratic leadership announced that they reached an agreement on a $3.5 Trillion budget resolution that they will move through the budget reconciliation process. Although some Senators are supporting the inclusion of HCBS funding in the budget reconciliation package, they are proposing to scale back the amount of investment in Medicaid HCBS from $400 Billion to $150 Billion. The full $400 Billion is necessary to fund expanded access to Medicaid HCBS for people with disabilities on waiting lists and to address the direct care workforce crisis. This funding is long overdue! Please call or email your Senators and Representatives and urge them to include and prioritize the full $400 Billion investment in HCBS proposed by the Better Care Better Jobs Act in the current budget reconciliation package. Please share your story on how HCBS impacts you and your family. Call your Members of Congress: Call the Capitol Switchboard at: (202) 224-3121 (voice) or (202) 224-3091(tty) and ask to be connected to your Senators. You can use this easy tool to find your members of Congress. Thank you for your advocacy efforts! The NDSC Policy & Advocacy Team
The Winston-Salem Journal ran, with color and “above the fold” a March 29, 2021 front page article about the newest legislative attempt to get additional funds approved for the Registry of Unmet Needs. Senator Joyce Krawiec’s (R-Forsyth County) Senate Bill 350 proposes 1000 new slots, divided and dispersed in creative ways to address several of the complicated solutions to our I/DD dilemma, including a ten-year state plan. Congratulations to her and author Richard Craver for detailing the saga that has plagued us for well over a decade, across warring legislatures of both parties. It’s a start. A tiny start. But it gives the House of Representatives a place to begin its 2021 work for a counter proposal, due in May. And, it gives you time to weigh-in. Below, please find key leaders in your state legislature to enjoin in conversation. It is a $37.5 million starter, matched with $75 million in federal dollars. Don’t be alarmed, NC has that kind of undesignated money, and more. Senator Krawiec has joined the I/DD caucus as its chair and our waiver action team has been invited to participate as stakeholders in the state-wide, three year Registry discussion and recommendation process under the North Carolina Council for Developmental Disabilities. Both venues may well speed up the Division of Health and Human Services, charged with the ten year plan offered by the Krawiec legislation. Please contact your state senators and house members by phone, letter, email, or coffee invitation. Be part of their discussions, town halls, and behind the scenes negotiating. The timing couldn’t be more important. Will 1000 slots help? Sure. Will it start something meaningful? Maybe. Will it address all those who have waited 13 -15 years? Absolutely…. in another 5 or 10 years!! This is “2long2wait!” Engage NOW! Continue reading
Advocacy for our children is taking a step forward - refer to number 4. The North Carolina Department of Health and Human Services announced several updates regarding COVID-19 vaccine administration in the state. Additional Frontline Essential Workers will be eligible for vaccine beginning on Wednesday, March 3. With the authorization of the Johnson & Johnson one-shot vaccine, we now have another tested, safe and effective COVID-19 vaccine to protect-against virus-related hospitalization and death. With three vaccines, North Carolina can get more people vaccinated sooner. Please be sure to share our video with Frontline Essential Workers talking about why they plan to take their shot (English / Spanish) and our video with Agricultural Workers (Spanish) We will plan to move to Group 4, beginning with people who have a medical condition that puts them at higher risk and live in additional congregate settings, on March 24. This population includes anyone with conditions that have been identified by the CDC as increasing risk for severe COVID-19 illness and anyone who is living in congregate or close group living settings who is not already vaccinated including, people experiencing homelessness or living in a homeless shelter and people in a correctional facility, such as jail or prison. Learn more – Deeper Dive Group 4: Adults at Higher Risk of Exposure and Increased Risk of Severe Illness (Higher-Risk Conditions and Additional Congregate Settings). Definitions in Group 4 have been clarified. High-risk medical conditions include Intellectual and Developmental Disabilities, including Down Syndrome, and neurologic conditions, such as dementia and schizophrenia. Learn more – Deeper Dive Group 4: Adults at High Risk for Exposure and Increased Risk of Severe Illness (Essential Workers Not Yet Vaccinated and Other Group Living Settings) The definition of long-term care in Group 1 has been updated for people with intellectual and developmental disability. Long-term care includes people receiving long- term home care for more than 30 days including Home and Community Based Services for persons with intellectual and developmental disability, private duty nursing, personal care services, and home health and hospice. Learn more – Deeper Dive Group 1: Health Care Workers and Long-Term Care Staff and Residents.
Dear Friends, Colleagues, and “Too Long to Wait” Advocates – January is here and most of us are hard wired to think anew about the future; possibly even a positive spin on health and politics. As I write, the legislature is preparing to convene, newcomers are pondering committee assignments, and no doubt, deals are being designed around available resources, dreams, and schemes. Cynics imagine the worst, optimists search for silver linings. We at the ncwaiveractionteam.com are simply preparing to do the work necessary to move our ideas, agenda, and mostly our stories, forward. We are in discussions with the Arc of NC, the NC Center for Developmental Disabilities, and several other organizations who work with and monitor the legislature as well as recommend to state agencies. There is always work to be done and we are – in spite of the virus – trying to connect in every way possible with you and our fellow advocates. Continue reading
First, we celebrate those heroes and agencies who remain able, working from home and working from their hearts, to sustain their commitment to our disability communities and their care providers. Our work as an action team is ahead of us. The “TOO LONG TO WAIT” march to Raleigh has just taken on a new dimension. As the state reserves evaporate addressing virus challenges, we know our wait will be longer and our work and lives will be harder. This fall’s election and next Spring-Summer-Fall’s North Carolina legislative session will be critical if we want our long term message on the minds of those we elect. To that end, we are calling on each of you to engage this election as if your life and loved ones depend on it. (It does!) Find the NC legislator whom you can embrace – in the long term – who will support the need for waiver discussion and action. Support them in a way they will remember you. Our work must continue. To help with telling our stories – wrapped in the blanket of medical and economic Covid-19 realities - we are calling on you to add to our family stories. We want them to dot the state throughout 2021 as reminders that “Too Long To Wait”, has gotten longer! CALL TO ACTION: (First – VOTE! We encourage people to secure absentee ballots, just in case) Send us your written stories and photos to publish. Let us know if we can help you capture video images to edit and share. Tell us about your letters and conversations with legislative candidates and ways we can build synergy and track with advocacy groups you respect and support. Please encourage everyone to register on this website! ***READ SAMPLE LETTERS HERE*** “In Case You Missed It!” Last month was National Disability Voter Registration Week (July 13-17). The aapd.com website offers many ways to engage, REV UP as their call to action: Register, Educate, Vote, Use (your) Power. Please visit their website as a resource for your own local call to action with targeted sections on social media flyers, op ed writing, and a great toolkit for engagement. AAPD (American Association of People with Disabilities) are “ Conveners, Connectors, and Catalysts. “
The Coronavirus has added new challenges and responsibilities to our work. Covid-19 has accentuated the caregiver and the care receiver interface. We find many of our caregivers are either opting for stay-at-home guidelines or required at home for school age children and other family challenges. For the provider agencies and families needing services this is a shared employment nightmare. Continue reading
Due to the CoronaVirus, some of our outreach events are on hold, but we want to fill you in on recent 2Long2Wait! actions and media coverage. We hope you are finding ways to cope with the crisis and the challenge it presents your families and organizations. Virus aside… we have good news to share. 33 counties are now represented in our ncwaiveractionteam.com database. We are 1/3 of the way toward state-wide contact. The Forsyth County team has had great success getting the word out. Continue reading