The Lanterman Act Entitlement does not live up to its promise.
The Lanterman Act entitlement was visionary in 1977, granting people with intellectual and developmental disabilities (I/DD) broad access to needed services. Today, despite the entitlement, people often wait months for services or are denied services that they need to meet their goals. Workforce shortages, inadequate person-centered planning, and perceived scarcity contribute to people with I/DD going without the services they need.
With California’s 21 regional centers each implementing the Lanterman Act in their own way, people with I/DD experience the system differently based on their region, or even their individual service coordinator. More oversight and standardization can help bring all regional centers up to a higher standard. The expertise of people with I/DD who receive services must be at the table to inform and correct both gaps in service and a critical lack of equity for underserved communities.
Systemic racism continues to create barriers to services.[35]
Regional centers do not distribute services equitably to the people they serve. People of color receive about half as much per capita spending on their services compared to people who are white. Many systemic factors contribute to this disparity. For example, administrative burden unequally affects consumers of color, and lack of language access stands in the way of equal access to services. The I/DD service delivery system must embed equity in every policy and practice and work to reverse the detrimental effects of systemic racism within the system.
People with I/DD lack real choices about where to live.
The HCBS Settings Rule says people have a right to make choices about where to live, like choosing between disability-specific and non-disability-specific settings. However, many people with I/DD are not given this choice today. Instead, options like group homes are assumed to be the best fit for people. In particular, systems-involved individuals and people with co-occurring I/DD and behavioral health conditions are often placed in restrictive, small congregate settings where they do not get to make their own choices about their lives.
In fact, California scores below the national average on measures of how much choice and control people with I/DD have over their lives.[36] Two factors that contribute to this lack of choice are:
- Lack of housing affordability and accessibility, with no housing markets in California being affordable to people on SSI.[37]
- Lack of services for people with complex needs to live independently in less restrictive environments.
California must embrace the HCBS Settings Rule going forward by offering true choice to people with I/DD, regardless of co-occurring conditions or perceived severity of need.
Communication access needs to be uplifted and expanded.
Communication should not just be an accommodation; it should be the expectation. With the invention of the iPad, Augmentative and Alternative Communication (AAC) devices are now more readily available with funding from the systems that serve individuals with disabilities. However, owning an iPad does not in itself make you a communicator. Systems must consider how an individual will access their communication and the supports needed to provide equitable access. For some, this may require a support person who can provide sensorimotor regulation, assist in programming technology, hold a keyboard or low-tech letter board, transcribe communication, and more. State agencies like DDS and DOR often overlook these complexities of communication access and assume that providing an AAC device is equivalent to speech.
Communication is a human right that, for some individuals, may require training from a qualified AAC specialist for the individual and their caregiver(s). This support should not be a barrier to living a self-determined life, but often it is.
These agencies need to make these changes to support AAC users:
- Ensure every individual has their choice of communication. This may require an assessment with an AAC specialist and other professionals who will consider how communication can be accessed.
- Honor an existing and established mode of communication without question.
- Provide communication training and support(s) as separate service(s) to both the individual and their circle of support.
- Ensure equitable access to meetings both public and private with the accommodations an individual requests. Some examples may include extra time to comment, additional staff support hours, enabling the chat, or a meeting moderator who can read their input for virtual platforms.
- Collaborate across systems to ensure communication accessibility is consistent. ADA requirements for effective communication state that “When choosing an aid or service, Title II entities are required to give primary consideration to the choice of aid or service requested by the person who has a communication disability.” As such, giving an AAC user the right to choose and the accessible supports they require is the responsible thing for the systems that serve them to do.
- Collect data on disabilities that affect communication. Access and support to communication tools and trained support staff are not currently identified or tracked by any state or federal agencies.
Without communication access and support in education, employment, or housing the freedom and independence to choose is impossible. Living an authentic life is impossible without authentic communication.
[37] “Priced Out: The Housing Crisis for People with Disabilities.” Technical Assistance Collaborative.