Policy & Advocacy News – March 2022
A Note from the CEO…
This month we celebrated Intellectual and Developmental Disability Awareness Month which was first started when a public proclamation was issued by President Ronald Reagan in 1987. The purpose of the proclamation was to raise awareness of people living with developmental disabilities, as well as urge Americans to provide people living with developmental disabilities “the encouragement and opportunities they need to lead productive lives and to achieve their full potential.”
I challenge everyone to look beyond awareness and celebration and to embrace action. People with intellectual and developmental disabilities still face far too many societal obstacles and physical barriers to living the life they want and deserve. Let’s all use Developmental Disability Awareness Month as a springboard to advocate loudly for real and meaningful inclusion of people with all disabilities in every aspect of our community year round.
Thank you for all you do for people with disabilities.
Lori Anderson, President & CEO
Momentum’s VoterVoice Advocacy Center
Advocacy Contacts
Governor Gavin Newsom
Phone: (916) 445-2841
Fax: (916) 558-3160
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National News
Congressional Briefing Highlights Critical Need for Federal Investment in Cerebral Palsy Research
On March 24, U.S. Senator Maggie Hassan (NH) and Congressman Steve Cohen (TN-9) sponsored a Congressional Briefing, The Critical Research Need for Cerebral Palsy – The Most Common Lifelong Physical Disability, to highlight the need for increased federal investment in cerebral palsy research.
Momentum joins the Cerebral Palsy Foundation in calling on Congress to support federal funding for important cerebral palsy (CP) research at the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to improve lives and outcomes for people with CP. Congress failed to include any appropriations for dedicated cerebral palsy (CP) research funds in the FY2021 federal budget even though CP is the most common physical disability in children, affecting more than 1 in every 345 children, totaling more than 1,000,000 Americans and 17,000,000 people worldwide.
“Right now, because of lack of research funding, there is really no consensus on best healthcare practice and treatment of CP throughout the lifespan,” explained Dr. Nathalie Maitre, a parent advocate and Director of Early Development and Cerebral Palsy Research at Emory University, at the briefing. “I still get very frustrated, and scared even, trying to figure out what is the best care for my son.”
Cathryn Gray, a patient advocate and internationally ranked adaptive athlete at the University of Michigan shared her experiences during the briefing. “It has never been clear why I was born so early or why I have cerebral palsy, as is the case with so many people with CP, because the necessary research just hasn’t been done,” said Gray. “Because of my experiences, I’ve worked hard to speak up and encourage members of Congress to support cerebral palsy research. It’s been very difficult as a person with the most common lifelong physical disability to understand why there hasn’t been more research support that would lead to better treatments, services, care and understanding of cerebral palsy in children and adults.”
“We can’t let this continue to happen to children and adults with CP everywhere, and we don’t have to,” adds Dr. Maitre. “People with cerebral palsy have already been waiting too long for meaning improvement in their treatment and their quality of care. But without increased dedicated funding, progress toward improved quality of life is so excruciatingly slow so please make a change now.”
You can add your voice to help make that change now by visiting Momentum’s VoterVoice online advocacy campaign. Click here to act today.
National Council on Disability Releases Health Equity framework for People with Disabilities
The National Council on Disability (NCD) recently released a “Health Equity Framework for People with Disabilities.” The comprehensive framework recommends an all-of-government approach to addressing medical discrimination and health disparities for people with disabilities. In the report, NCD provides a roadmap for addressing long-standing systemic barriers in healthcare, offers examples of health disparities, and provides recommendations on how to address these health inequities, including:
- Designate people with disabilities as a Special Medically Underserved Population
- Require comprehensive disability clinical-care curricula for medical providers
- Ensure accessible medical diagnostic equipment
- Improve data collection and reporting on people with disabilities as a demographic
Click here to download a copy of this report.
CMS Provides States with Additional Guidance on Medicaid Redeterminations as End of Public Health Emergency Approaches
On March 3, 2022, the Centers for Medicare & Medicaid Services (CMS) sent guidance to all state health officials on CMS expectations for state Medicaid agencies as they begin to process outstanding Medicaid eligibility and redeterminations.
During the COVID-19 public health emergency, (PHE) states were required by CMS to maintain continuous Medicaid coverage for all existing recipients in return for enhanced federal contributions to state Medicaid systems. Before the pandemic, state Medicaid agencies evaluated the eligibility of beneficiaries each year, removing from the rolls people living out of state or earning too much to qualify for the joint federal-state program. The continuous coverage mandate ends when the administration lifts the PHE.
The guidance, “Promoting Continuity of Coverage and Distributing Eligibility and Enrollment Workload in Medicaid, the Children’s Health Insurance Program (CHIP), and Basic Health Program (BHP) Upon Conclusion of the COVID-19 Public Health Emergency,” sets the expectation of CMS that states establish an orderly process that reduces barriers to continued Medicaid coverage that promotes access and equity.
Most of the 78 million people on the Medicaid rolls, including 33 million children, will remain eligible. But Medicaid officials, advocates and health policy researchers warn that many people will fall out of coverage as they try to prove their eligibility for the first time in two years, or that overwhelmed Medicaid agencies will drop them by mistake.
Once the PHE ends, every state will have to determine the eligibility of every single Medicaid recipient. CMS issued guidelines early this month asking states to accomplish the task within 14 months after the emergency expires. The original request was for states to complete the work within six months, but CMS lengthened the period after states protested that six months was far too short a time period.
Even the 14-month time frame could present a significant problem for state Medicaid agencies, as they are suffering from the same severe worker shortage facing the private sector. Many Medicaid agencies are concerned that they will not have sufficient time to train new staff if, in fact, they are able to recruit new staff in sufficient numbers to address the huge caseload.
Beyond the overall shortage, during the pandemic many of the agencies’ most experienced employees have left. Once agencies find new workers — assuming they can find them — they will then have to take the time to train them.
Click here for more information on Medicaid eligibility after the PHE expires from the Kaiser Family Foundation.
California News
Momentum Calls for Delay in ICF Carve-In to CalAIM Managed Care
Momentum has joined with the California Association of Health Facilities (CAHF), the Disabilities Services Network (DSN), the California Association of Health Plans (CAHP) and the Association of Regional Center Agencies (ARCA) in calling for a delay of at least one year of the carve-in of Intermediate Care Facilities for the Developmentally Disabled (ICF-DD) into managed care under CalAIM.
The request for a minimum of a one-year delay is necessary to ensure a successful transition to managed care for people residing in ICF-DD settings. Currently, the California Department of Health Care Services (DHCS) is planning to integrate or, “carve-in,” ICF-DD into managed care under CalAIM on January 1, 2023. However, in a recent communication from DHCS, a consultant admitted that staff was still working on “broad” integration issues and had yet to work through ICF-DD specific questions.
Given the complexity of the CalAIM transition for homes and residents, the myriad of other delivery system changes occurring in Medi-Cal, as well as the current operating environment from ongoing COVID-19 related impacts, it is essential that more time be given to work out the details and to allow for additional stability in the disability support system before this significant change takes place.
ICF-DD homes and residents continue to be hit disproportionately hard by the COVID-19 pandemic and are enduring significant hardship and distress with the worst staffing shortages in history and costs at an all-time high. All self-advocates, advocates and family members of people residing in ICF-DD settings are strongly encouraged to contact their legislators to ask for a delay to at least January 1, 2024, for the planned carve-in of ICF-DD-H and ICF-DD-N into CalAIM managed care. Please act today by visiting Momentum’s VoterVoice site.
California Coalition Seeks $50 million for Head Start Programs in the FY 2022-23 State Budget
Head Start has proven to be a vital and cost-effective resource for California’s most vulnerable children and families. To ensure this life-changing resource remains accessible to those who rely on it, recruiting and retaining qualified teachers is key. A large and diverse coalition of Head Start agency leaders, staff, parents, families, and others who support our most vulnerable communities are requesting $50 million for Head Start programs in the FY 22-23 state budget.
This funding will support expanding access to early learning and care to more families, ensuring children reach kindergarten healthy and ready to learn, and helping families become financially secure. Head Start programs are federally funded at the same rate across the nation, which poses challenges in a high-cost state such as California. Salaries for Head Start teachers are deeply inequitable compared to their TK-12 counterparts so Head Start programs will be authorized to use the proposed funding to attract and retain qualified staff.
Click here to visit Momentum’s advocacy site to contact your legislator today.
Medi-Cal Asset Limit for Californians with Disabilities Would be Eliminated Under Proposed FY2022-23 State Budget Language
The proposed FY2022-23 California state budget contains a significant provision that would eliminate the asset limit for older adults and Californians with disabilities to access Medi-Cal programs and services.
This policy initiative started with the inclusion of an ongoing $105.7 million in the FY2021-22 budget to cover the expected increase in Medi-Cal enrollment due to removing the asset limit. Language in the proposed budget would establish a two-phase implementation.
First, before July 2022, California will raise the Medi-Cal asset limit to $130,000 for an individual. Then, by January 2024, the Medi-Cal eligibility asset test will be completely removed for people with disabilities and seniors whose assets are currently limited to $2,000 for individuals and $3,000 for couples. This means that seniors and disabled people will no longer have to give up any financial reserves or assets they may have to be eligible for for full Medi-Cal coverage.
Click here to access the proposed FY2022-23 California State Budget.
Advocacy Events
2021 Annual Disability Statistics Compendium Released
The 2021 Annual Disabilities Statistics Compendium has been released by The Rehabilitation Research and Training Center on Disability Statistics and Demographics (StatsRRTC) and is available to download free of charge.
The Annual Disability Statistics Compendium, Annual Disability Statistics Supplement, and State Reports for County-level Data are web-based tools that pool disability statistics published by various federal agencies together in one place. The Compendium and supplements are valuable tools when working on legislative and other matters relating to persons with disabilities.
The StatsRRTC is a part of the Institute on Disability/UCED (IOD) at the University of New Hampshire. The IOD was established in 1987 to provide a university-based focus for the improvement of knowledge, policies, and practices related to the lives of people with disabilities and their families.
Click here to download a copy of the 2021 Annual Disability Statistics Compendium.
Click here to request a hard copy of the Compendium.
The ANCOR Foundation and United Cerebral Palsy Release The Case for Inclusion 2022
On March 8, the ANCOR Foundation and United Cerebral Palsy released The Case for Inclusion 2022: Blazing Trails to Sustainability for Community Disability Services.
The Case for Inclusion 2022 offers new data assessing how well state programs are supporting people with intellectual and developmental disabilities to be included in the community, as well as policy analysis examining the impact of pandemic-era policies on the sustainability of community providers.
Click here to access state-specific data.
Click here to download a copy of the report.
Click here to view a video recording of the launch to learn about how the Direct Support Professional (DSP) workforce crisis and the COVID-19 pandemic are impacting the lives of the people with disabilities and how advocates can use The Case for Inclusion to blaze trails to a more sustainable service delivery system.
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