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Momentum Joins the Disability Community in Mourning the Loss of Judy Heumann
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The disability rights movement lost a pioneering advocate and champion with the passing of Judy Heumann on March 4, 2023.
Heumann was born in 1947 in Philadelphia and raised in Brooklyn, NY. Heumann contracted polio at age two. Her doctor advised her parents to institutionalize her when it was clear that she would never be able to walk. “Institutionalization was the status quo in 1949,” she wrote in her memoir “Being Heumann”. “Kids with disabilities were considered a hardship, economically and socially.”
Heumann was prevented from attending kindergarten. The school principal blocked her admittance, labeling her a “fire hazard” due to her use of a wheelchair. Through persistence, she graduated high school, and later earned a B.A. from Long Island University before attending the University of California, Berkeley, where she earned a Master’s in public health.
Heumann was a founding member of the Berkeley Center for Independent Living, which was the first grassroots center in the United States, and helped to launch the Independent Living Movement nationally and around the world. She also co-founded the World Institute on Disability as one of the first disability rights organizations founded and led by people with disabilities.
In 1993, Heumann relocated to Washington, D.C. to serve as the Assistant Secretary of the Office of Special Education and Rehabilitation Service. From 2002-2006, she served as the first Advisor on Disability and Development at the World Bank. From 2010-2017, she worked as the first Special Advisor for International Disability Rights at the U.S. State Department. She was also appointed as Washington, D.C.’s first Director for the Department on Disability Services.
Heumann played a key role in the development and implementation of numerous pieces of legislation, including Section 504, the Individuals with Education Act, the Americans with Disabilities Act, and the Rehabilitation Act. Importantly, she also advocated for the creation of the UN Convention on the Rights of Persons with Disabilities, which has been advancing the inclusion of disabled people in the US and around the world by fighting to end discrimination against all those with disabilities.
“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example,” Heumann said. “It is not a tragedy to me that I’m living in a wheelchair.”
Judy starred in the film “Crip Camp: A Disability Revolution,” which highlighted her early work in the disability rights movement. She co-authored “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.”
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Momentum Staff Joins CDSA in Sacramento to Advocate for Strengthened Disability Supports in FY2023-24 California Budget
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Momentum staff recently joined advocates and California disability service providers in Sacramento to advocate for inclusion of several budget provisions that will improve disabilities supports in the state.
Members of the California Disabilities Services Association (CDSA), a provider association of more than 105 community-based disability support providers including Momentum, took part in the 2023 Legislative Affairs Conference. On March 8, CDSA members met with 109 state lawmakers to ask their support for strengthening California disability supports.
Two years ago, the legislature approved a $1.8 billion investment in California disability services to begin addressing the direct support professional (DSP) workforce crisis and long-stagnant disability provider rates through implementation of a 2019 rate study. However, advocates have identified several problems with the implementation of this legislation.
The 2019 rate study contained flawed assumptions on some rate models and omitted entirely some service models. It also eliminated service flexibility and allows for some rate reductions after 2024. To address these flaws, advocates met with legislators and staff to ask for:
- Development of rate models for all services.
- Inclusion of long-term service flexibility by allowing some remote supports.
- Requirement of a schedule for updating rate model inputs.
- Protection of intended funding and legislative intent by ensuring that no rates will be reduced upon full implementation of the rate study.
By addressing these issues, the state can protect disability service access for Californian’s with I/DD and support appropriate raises for DSPs over time. If you have any questions regarding these issues, or want information on how you can advocate for these changes, you can contact Mark Hagen, Momentum’s Director of Public Policy at (818) 456-6328 or email here.
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Assemblymember Addis Introduces the Disability Equity and Accountability Act
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Assemblymember Dawn Addis has introduced AB 1147, the Disability Equity and Accountability Act. The bill, which has broad support among self-advocates and families, strengthens the ability of the California Department of Developmental Services (DDS) to provide effective oversight of the 21 regional centers.
The Lanterman Developmental Disabilities Services Act, enacted in 1977, requires the State of California to provide services and supports to individuals with intellectual and developmental disabilities (I/DD).The Department of Developmental Services (DDS) funds those services and supports to over 400,000 Californians through contracts, with a network of 21 regional centers. As documented in state audits, oversight hearings, and reports by stakeholders, stronger state oversight, attention to performance measures, and greater transparency are needed to improve the quality and effectiveness of developmental services.
AB 1147 focuses on three main areas for people served by regional centers:
- Equity – People served by regional centers receive equal and timely access to services regardless of their race, ethnicity, disability, or location by requiring DDS to establish a minimum set of specific services that all regional centers must provide.
- Accountability – The state looks more closely at how regional centers are serving their clients and holds them responsible for how clients are treated and served. It would accomplish this by requiring DDS to establish targets/standards above, which may result in rewards for a regional center for good performance, and a separate set of standards below, by which the regional center is subject to levels of probation and required corrective action.
- Transparency – Clients and families have more opportunities to see how they are individually served and how their regional centers are serving all clients through a new technology system and added transparency.
AB 1147 will be heard by the Assembly Human Services Committee in the coming month. Please visit Momentum’s online advocacy Center by clicking here to add your voice to this important advocacy initiative.
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Assemblymember Arambula Requests Funds for Additional Service Coordinators at California Regional Centers
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Assemblymember Dr. Joaquin Arambula, chair of the Budget Subcommittee no. 1 on Health and Human Services, has requested $64.4 million in state general funds to stabilize and modernize the Department of Developmental Services (DDS) Regional Center (RC) service coordination activities.
RC service coordinators are responsible for coordinating services for people with disabilities and their families. The additional funds are intended to increase salaries to increase retention of service coordinators as well as hire additional coordinators to meet staff load ratios mandated by the federal Centers for Medicare and Medicaid Services (CMS). If California fails to improve these caseload ratios it risks losing millions of federal Medicaid dollars.
“The most important work of RC is coordinating services for people with developmental disabilities.” explained Dr. Arambula. “To do so most effectively, a service coordinator needs to have a long-term relationship with the individual they are serving and their family.”
These funds are intended to address several issues raised in a California state auditor’s report that found the Department of Developmental Services have not ensured Regional Centers have the necessary resources to effectively serve Californians with intellectual and developmental disabilities. You can access this report by clicking here.
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Administration’s Budget Request Includes $150 Billion for Home and Community-Based Services
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The White House’s FY 2024 budget blueprint was released this past Thursday, recommending $150 billion over 10 years to improve and expand home and community-based services. The funding marks a significant win for disability service providers and individuals with intellectual and developmental disabilities who rely on these services.
Congress will now begin drafting its own budget but is not expected to reveal any plans for several weeks. Momentum will continue to join with our state and federal advocacy partners in advocating and working with stakeholders to ensure funding is allocated in a way that supports Medicaid services.
Momentum encourages individuals with disabilities, their families, and providers to use our online advocacy tool to make their voices heard and push for increased funding for Medicaid.
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Home and Community Based Services (HCBS) Access Act Introduced in Congress
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On March 9, Congresswoman Debbie Dingell (MI-06), Senator Bob Casey (D-PA), and Congressman Jamaal Bowman Ed.D. (NY-16) introduced the Home and Community-Based Services (HCBS) Access Act to make HCBS a mandatory benefit for people who qualify for Medicaid long-term services and supports (LTSS). The Senate legislation is co-led by Senators Maggie Hassan (D-NH), Sherrod Brown (D-OH), and Tim Kaine (D-VA).
Currently, people eligible for Medicaid LTSS are qualified for immediate access to nursing homes or intermediate care facilities. The HCBS Access Act is designed to ensure people with disabilities and older adults have a real choice of care and support options between HCBS supports and a higher level of support. The bill would, over time, eliminate HCBS waiting lists and the need for states to repeatedly apply for waivers from the Centers for Medicare and Medicaid Services (CMS) to provide HCBS services.
Specifically, the bill would:
- Increase Medicaid funding for home- and community-based services.
- Provide grant funding for states to expand their capacity to meet the needs of people who prefer HCBS.
- Make steps to improve the stability, availability, and quality of direct care providers to help address the decades-long workforce shortage crisis.
- Provide states with resources so that caregiving workers have stable, quality jobs and a living wage.
- Provide training and support for family caregivers; and
- Create better evaluation measures to assess the quality of HCBS being provided.
“It is time we make the smart economic investment in home and community-based services. My HCBS Access Act would provide seniors and people with disabilities with a real and significant choice between receiving care in a long-term care facility or at home, where so many of them wish to stay, and ensure that paid caregivers can turn poverty jobs into family-sustaining jobs.” explained Senator Casey.
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Employment Of People with Disabilities Hits Record High
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The employment rate for Americans with disabilities has reached an all-time high, federal officials say.
Among people with disabilities nationally, 21.3% had a job in 2022. That’s up from 19.1% the previous year and represents the highest rate on record since the government began tracking such data in 2008.
The snapshot of disability employment last year comes in a new report issued by the U.S. Department of Labor’s Bureau of Labor Statistics. The agency collects data on people with disabilities in the job market as part of its Current Population Survey, which polls 60,000 households each month about employment and unemployment.
Despite the positive employment numbers, the report indicates there is still much progress that needs to be made to provide jobs for all people with disabilities who seek employment.
Workers with disabilities were more frequently self-employed and about twice as likely to work part time as compared to others, according to the Labor Department data.
Nearly 80% of those with disabilities were considered to be “not in the labor force” meaning that they were not employed or seeking work. The report indicates that the “vast majority” of these people — all but 3% — did not want to have a job. Even with the increase in disability employment, the Labor Department found that the unemployment rate for individuals with disabilities remained about twice as high as for individuals without disabilities. And, people with disabilities across all age groups were “much less likely to be employed.”
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2023 Annual Disability Statistics Collection is Now Available
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The Institute on Disability at the University of New Hampshire (NH UCEDD) has released the 2023 Annual Disability Statistics Compendium, Annual Disability Statistics Supplement, and State Reports for County-level Data. The web-based tools provide a range of disability statistics.
ANCOR and UCP Release Case for Inclusion 2023
ANCOR, a national trade organization representing more than 2,000 disability service providers, including Momentum, and United Cerebral Palsy (UCP), recently released the Case for Inclusion 2023.
Case for Inclusion 2023 includes new data assessing how well all 50 states and the District of Columbia are supporting people with intellectual and developmental disabilities (I/DD) to be included in the community.
This year’s edition of the annual report finds ongoing failures to invest in community-based I/DD services are exacerbating a long-standing workforce crisis, jeopardizing the ability of people with I/DD to access their communities. To read about more of the findings and access data click here to access and download a copy of the Case for Inclusion 2023.
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