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Data: University of Minnesota Institute on Community Integration |
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Most states do not run large institutions for people with IDD. We still do, and it's not clear why
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For many, it doesn’t make sense to provide services in institutions if the supports are intended to help people live the life they want in their community.
The logic: If the goals are participation and connection, then supports should be embedded and readily available in the community, as needed.
Most community supports are also much less expensive than institutional care.
But a review of national data shows Washington is one of just 13 states still operating large institutions for people with developmental disabilities .
- This could affect Medicaid funding if intermediate care facilities, a type of institution, are used inappropriately for ongoing, long-term placement.
- It also speaks to a legacy of segregating people with intellectual or other developmental disabilities (IDD) in Washington. Some civic leaders here mistakenly believe people with IDD are better served separately, or that institutions offer a type of IDD support only available in that setting. Neither is correct.
Lack of support is serious and can lead to crisis for individuals and their families. But operating large institutions doesn't solve the problem. Typically, crises track back to:
- Workforce capacity
- Failure to fund enough slots
Both require intentional work to align availability with demand. In spring of 2022, the state legislature passed a foundational bill to gather data to increase community supports and examine the need for respite and crisis support. But the work of actually building out a stable network remains.
The University of
Minnesota's Institute on Community Integration, which did the national analysis, has recommendations for elected leaders, including:
- Address a severe workforce shortage so people can access providers and
services.
- Use Medicaid rebalancing and other incentives to downsize and close all IDD facilities serving 16 or more people. Shift resources into individualized supports in home and community-based settings.
These align with asks from most state advocates, as well.
You can read the policy brief here: https://bit.ly/3t7XUm4
IMPORTANT CONTEXT:
Not that long ago – just a generation or so – institutions were the only options people with intellectual and developmental disabilities (IDD) had for education or to learn workforce or life skills.
Prior to the mid-1970s, government programs could and did discriminate against people with disabilities. The Rehabilitation Act of 1973 and its Section 504 was a turning point.
- Section 504 established the right of disabled people to equal access and opportunity to benefit from federally funded programs and services.
- While the federal government was hashing out implementation rules for Section 504, the Individuals with Disabilities Education Act (IDEA) passed, offering schools grants to pay for special education services as long as they followed certain rules.
- The Americans with Disabilities Act passed about 20 years later, establishing civil rights for people with disabilities, regardless of whether federal funds are in play.
Section 504 and IDEA also mandated services be provided in integrated settings. That is, people with disabilities shouldn't be segregated in order to access support. While IDEA applies exclusively to schools, Section 504 applies to any program receiving federal funding: health care, social services, or education.
The laws made a huge difference, as did a U.S Supreme Court decision from the late 1990s called Olmstead. That one said people couldn't be forced to receive long-term support in institutions. They should be able to access it in home or community settings.
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Data: University of Minnesota Institute on Community Integration |
That is, today most supports come to the person, as opposed to requiring people to live in institutional settings that they otherwise wouldn't be in.
Washington state also shifted and today most DDA clients are supported in the community. Yet we still shoulder the costs of large institutions while struggling to invest in home and community-based supports.
In Washington, our large institutions for people with IDD are called Residential Habilitation Centers. Habilitation is similar to rehabilitiation. But where "rehab" is about helping people regain skills lost to illness or injury, habilitation is about helping people master skills that are not typically developing or that need ongoing support to maintain. A popular habilitative support for adults with IDD is job coaching.
The state's RHCs, in turn, include a mix of nursing homes for people with IDD and intermediate care facilities for people with intellectual disabilities. Campuses have one or the other, or both. The RHC in King County, Fircrest, has both.
Intermediate care facilities are not intended for long-term placement or to provide homes. Intermediate care means people come for a regimen of active support, then return to the community. That's not how Washington was operating, though. Over the past few years DDA made changes to come into compliance, including significant investment in RHC staffing and facilities. A similar level of investment was NOT made to home and community-based supports. Last year, more than 14,000 sat on DDA's no paid services list.
During this same time, demand for crisis stabilization shot up. Three of the four RHCs don't provide that type of care, though. Nor do they offer integrated mental health supports, a growing area of demand. People with IDD have high rates of co-occurring mental health conditions, but many mental health professionals do not work with people with intellectual disabilities, with people who are nonverbal, or with people more profoundly impacted by their developmental disabilities.
The upshot is, Washington's support system for people with IDD hasn't been providing the level of support needed, and hasn't been able to adapt to emerging need.
VOTER EDUCATION: WHO DECIDES WHAT
In Washington, supports
specific to people with intellectual and developmental disabilities are
overseen by the state Developmental Disabilities Administration, part
of the state Department of Social and Health Services (DSHS). These are long-term
supports and are funded through Medicaid, a federal-state partnership. Support through RHCs and some smaller state residential settings are provided by state employees. Most community-based supports, though, including community residential services, are provided by private contractors, mostly nonprofits.
State legislators:
- Decide funding levels and things like how many slots to pay for, or which supports DDA should provide.
- The decision to not provide services to all DDA clients was made by legislators.
- The decision of how much to pay providers is also decided by legislators.
The governor:
- As
state executive, the governor is in charge of running DSHS and making sure it
complies with state and federal law. The governor has staff to advise on policy and appoints people to run state agencies
- The governor can veto bills or items from the state budget, but the governor cannot add funding.
- The
governor can, however, make funding and policy recommendations to the
legislature.
Governor appointees:
Agency leaders (appointees) and
their staffs run state agencies and make day-to-day operating decisions. Agency leaders also create the rules for how agencies will comply
with federal and state law. These rules affect who has access. For instance, if funds are low, DDA can narrow the criteria for who is eligible for support.
- By Ramona Hattendorf, Director of Advocacy at The Arc of King County
