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Become an advocate!
More than 386,000 Californians with intellectual and/or developmental disabilities (IDD) live in California; they are our neighbors, classmates, coworkers, family and friends. However, their support structure has been grossly underfunded for more than two decades. Direct support staff are quitting the field or working multiple jobs due to low wages, essential programs are closing throughout the state, there is a critical shortage of accessible and affordable housing for adults with IDD, the unemployment rate continues to grow, and individuals are forced to live with inadequate supports or with no supports at all. The COVID-19 pandemic has exasperated the challenges and put this population and their support system at high risk.
Lanterman Coalition member organizations across the state are working to protect the health and safety of those with disabilities during this unprecedented public health crisis. This year, Governor Newsom partnered with the Legislature to pass a budget for 2021-22 that invested $2 billion over 5 years to help stabilize the foundation of the disability system and close the funding gap for IDD services. While this budget was a major victory for Californians with IDD, there is still much work to be done to help address the disparities in the disability system so that every person has an opportunity to live their best life in an inclusive society.
In June 2021, during an unprecedented global public health crisis, the Governor passed an historic budget plan based on the recommendation of the Legislature that rightly prioritized Californians most vulnerable to COVID-19 and makes a ONE-TIME investment of $2 billion in supports for the intellectual and developmental disabilities (IDD) community. This budget plan closes the $1.4 billion funding gap for disability services and takes steps toward building back the foundation of California’s disability system.
The Administration and Legislature upheld the promise of The Lanterman Act to not to leave people with disabilities behind, especially during a time of crisis.
This year’s budget process was unlike any in history. California had an unexpected surplus of nearly $80 billion, the federal government passed several stimulus and COVID-relief measures, and the entire budget process was forced to be negotiated under restrictions due to the pandemic. In the end, however, budget was a major victory for California’s disability community, including historic investments into regional center services.
Regional Center Services: The Budget includes a variety of investments to support developmental services. It outlines a multi-year developmental service provider rate increase based on a 2019 Rate Study, increasing rates by $1.2 billion General Fund by 2025-26, with an implementation plan focused on improving consumer outcomes and quality of services. The Budget also includes investments to provide children ages three to four with provisional Lanterman Act service eligibility, improve consumer onboarding into the Self-Determination Program, increase competitive employment opportunities for individuals with intellectual and developmental disabilities, support crisis prevention and response services to individuals with intellectual or developmental disabilities, and provide direct service professional workforce training and development.
Service Provider Rate Reform: The Budget includes $89.9 million General Fund in 2021-22, growing to $1.2 billion General Fund (approximately $2.0 billion total funds) ongoing in 2025-26 for provider rate increases based on the DDS 2019 Rate Study. Annual funding includes resources for development and implementation of a quality incentive payment program focused on improving consumer outcomes and service quality.
In addition to the state budget, the federally approved American Rescue Plan Act brought approximately $3 billion to California to spend specifically on home and com-munity-based services (HCBS). The HCBS spending plan, as submitted by the state to the federal government, would include investments on top of the state budget that would benefit Californians with disabilities.
A LOOK BACK AND PREPARING FOR THE FUTURE ~
As a coalition of statewide and regional associations and organizations representing people with IDD, their families, and the workforce, we proudly unite our voices as The Lanterman Coalition. We stand together in our fight for the preservation of the Lanterman Act and advocate for the rights of individuals with IDD, their families, and the systems that support them across the state.
Through the Lanterman Act, California provides services and supports to more than 386,000 individuals with IDD, including infants, children, and adults. In response to COVID-19, the service and support system across the state quickly mobilized to meet the unique needs of individuals with disabilities, who the CDC has recognized as an especially vulnerable population to Coronavirus. Through innovation and collaboration, service provides across the state pivoted to providing alternative support services remotely.
While the 2021-22 budget provides some relief, individuals with IDD, their families and the workforce continue to experience financial stress, lack access to technology, and are experiencing a deterioration of mental and physical health due to the long term isolation as a result of the pandemic. Additionally, the disability system is facing an historic shortage of direct support professionals. Even prior to the COVID-19 pandemic, direct support staff turnover was high due to low wages.
In the coming year, we will have to work diligently to protect the $2 billion investment and reject any cuts in funding for services that support people with IDD. Any reduction in funding in future state budgets would be a tragic and unconscionable response during and post-pandemic and will put more people at risk in the short-term, and further threaten the sustainability of services and supports in the future.
As California begins to find its new normal during this global pandemic, it will be even more important that we ensure continuity of support for people with IDD. Without continued state budget support, many providers will not be able to continue to provide critical support and services for Californians with IDD, regional centers will struggle to adequately coordinate services, and individuals and families will be left behind. While these are challenging times, we urge the Governor and our legislators to continue to prioritize our community.
People with IDD cannot be overlooked. Click HERE to join us in the coming months by signing up to become an advocate and to share your story with us and our elected officials.
There are approximately 150,000 direct support professionals (DSP's) working in our state to support more than 330,000 Californian's with intellectual and developmental disabilities succeed in every aspect of their lives. Low rates for services, set by the state, directly impact DSP wages.
The state has set rates for the services it is legally obligated to provide to people with IDD too low. We are being denied these vital services because of unfilled positions and high worker turnover.
Dolores Huerta and her grandchildren explain why disability rights are civil rights and why California's lawmakers must #KeepThePromise
"Our son, David, has autism and significant difficulties with language and needs 24-hour staff support. In the last 27 months David has had 10 different support staff. For obvious reasons, this is not an ideal situation, and recruiting for David can be challenging due to the difficulties of communicating with him. Given the low wage rate with little opportunity for advancement, finding a higher paying job is always a prime motivation for staff to move on. There is always uncertainty about when the situation will resolve, and uncertainty is difficult for David and the rest of our family. The reassurance that would come with improvements for our direct support staff and knowing that the system is stable is priceless."
- Betsy Katz, Mom and President of The Arc of California
"I receive a paycheck twice a month. I work 120 hours plus each pay period and I bring home only $1500 at the most, usually less than that after taxes. I can't even afford my own place. I even started driving for Lyft to make ends meet. I love my job I enjoy going to work every day but it's not enough to survive."
- Anonymous Direct Support Professional, Solano County
For two decades, the state is failing Californians with intellectual and developmental disabilities (IDD), causing individuals and families to suffer without critical services and supports. Violating its legal requirement under the Lanterman Act, the state has chronically underfunded the community based organizations that provide services such as supported employment, independent living, family respite, and community integration. As a result, the workforce is leaving in masses - forced to leave the job they love because they struggle with poverty as a result of low wages - and programs are closing their doors. Instead of receiving the services they need to actively contribute to our communities, people are sitting at home without services and families are left abandoned by the state that promised to support them.
California's Lanterman Act passed in 1969. This law sought to end the long era of institutionalization by setting up the regional center system instead. This meant that people with I/DD could stay in their communities of origin instead of being removed to the segregated isolation of an institution. When this law passed state lawmakers promised to fund community based services and supports people with I/DD need to live full lives. Yet in recent years the state has failed to live up to its promise, leaving people with I/DD unsupported, isolated, and vulnerable.
Send a Thank You message to the Governor and our champions in the Legislature for passing a 2021-22 budget plan that prioritizes people with IDD and invests $2 billion over 5 years to support the disability community.
CLICK HERE to show your appreciation for their commitment.
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