About HB 1472 & institutions: We have challenges. Fearmongering doesn’t help

Testimony and comments spread misinformation and divert from meaningful improvement

• You can email your legislators here

HB 1472 is a straightforward bill: it consolidates institutional settings for people with intellectual and other developmental disabilities (IDD) from four sites to two. It was requested by the state Office of Financial Managment and is a part of a decades-long effort to reduce our institutional footprint while expanding care options for all.

• It does not take away services.
• It does not end institutional care for people with IDD.
• The type of services affected would continue at Fircrest near Seattle, and Lakeland Village near Spokane, and they have capacity.
• It also does not remove overnight respite options.

It consolidates one intermediate care facility and one nursing home into existing ones in Fircrest near Seattle and Lakeland Village near Spokane. The two remaining institutions would each offer both types of facilities. All residents at Rainier and Yakima Village would have a choice to continue with institutional care or move to a community setting.

And yes – the state and IDD community DO have quite of bit of experience helping people transition out of institutions, safely.

Community options for IDD services need more support. We all know this. But the fixes are achievable IF legislators choose to support them.

Fearmongering

In testimony and legislative debate, we have heard several points that are not substantiated by facts and that ignore the transformation of service delivery since the 1970s.

The most alarming is that people will die – one legislator suggested hundreds, even though only about 100 people will be affected by the consolidation.

Another suggested we have no community infrastructure to support people with IDD and that we have no plan or way to transition people to other settings, even similar ones.

THE TRUTH: People have been moving out of our state institutions for decades, safely. We have downsized successfully - we did it gradually over decades.

Since the 1970s, we successfully shifted from serving 4,000 to 5,000 adults and children in institutional settings, to serving 65,000 in the community.

For people requiring residential care, our statewide system of Supported Living providers serves 4,500 adults. Hundreds of others live in adult family homes, companion homes, and assisted living facilities. Even more live with family members.

Challenges

Do we need to better invest and refine some community services? Absolutely.

There is a pilot program for Supported Living community residential that combines training in behavior support with additional pay that has resulted in safe placements for people with complex behavior.

Another program improved community connection for people living in adult family homes.

Families have championed community day respite for years – and plead for more access.

THE TRUTH: People speaking out against HB 1472 are not suggesting expanding on success. They are not talking about serving more people, or all folks better. Or addressing the issues that prevent people from fully accessing support.

They are saying people with IDD living in institutions cannot leave without jeopardizing their health. Once in, you can’t check out.

And that is a dangerous lie.

Today, people with IDD live longer, healthier lives BECAUSE they are able access care and services in their communities. All relevant research supports the fact that community settings result in improved quality of life in areas of integration, social participation, employment, choice-making and self-determination, quality and duration of services, contact with friends and relatives, and other indicators.

This bill does not require anyone to move into the community. And it doesn't shift large numbers into the other institutions, also called residential habilitation centers, or RHCs for short. Based on past consolidations and waiting lists of people who have already requested community care, DSHS expects half of the 120 or so to move to community settings and half to move to either Fircrest or Lakeland Village. 

Fundamentally, the question is: Do we still need four institutions?

From 1,900 residents to 71

At Rainier School, one of the sites that would close, enrollment declined from a peak of 1,900 in the late 1950s, to 318 in 2018, to 71 today.

Rainier opened in 1939 and operates something called an intermediate care facility for people with intellectual disabilities (ICF/ID). These are transitional programs where adults with cognitive disabilities that started in childhood go to receive “active treatment” in adaptive skill development.

Yakima Valley, the other site subject to closure, opened in the 1950s and began as an institution for children with intellectual disabilities. After public schools were required to serve children with IDD, Yakima converted to a nursing home. Today, about 30 adults with IDD live in an aging facility built to serve hundreds.

If HB 1472 passes, residents at Rainer and Yakima Valley retain the right of choice.

The 71 residents at Rainier will be able to choose a community residential option – such as Supported Living and related services – or transfer to an ICF/ID at either Fircrest or Lakeland Village.

The 30 residents at Yakima Valley can choose a community option, such as an adult family home or assisted living facility, or one of the IDD nursing facilities at Fircrest or Lakeland Village.

The overnight, short-term respite at Yakima would continue. Those services are available for up to 30 days for eligible DDA clients.

Transition support – and years of practice

People opposed to the bill have also suggested that folks would be left adrift – cut off from service or care. Or that the state lacked ability or structure to help with transitions.

THE TRUTH: When people with IDD transition to community services, they have extensive, individualized support from family mentors  who explain options, assist with decision-making, and ensure everything is in place before a move. Their work is personal, hands-on, and rooted in lived experience. You can read some of their success stories here.

Individuals moving have access to the PATH Program of peer mentors.

Roads to Community Living covers the first year of transition to the community, and involves careful, individualized planning and person-centered coordination to ensure success. That program has been around since 2007.

DSHS also has years of experience to draw from, including four times when dozens at a time needed support moving to new care facilities or community placements. The most recent was in 2022. The moves:

1994 - Interlake School in Medical Lake closed. It served 150 people with IDD who were considered medically fragile. All transitioned to community settings or another institution.

2002 - After the Olmstead decision affirmed the right to community services, the state budgeted to assist 80 people to transition out of institutions; 61 took up the offer and successfully moved out – including people with high support needs and complex behavior.

2011 - The Frances Haddon Morgan Center closed, prompting transitions for 52 residents. In the months before closure, 2 suspicious deaths were investigated at the facility. After leaving, one person died after drinking laundry detergent, but multiple investigations determined the move was not directly responsible. The state did a follow-up report a year later and found all other former residents were stable in their new settings. Some insights from that report:

• Anxiety resolved most quickly for those who chose Supported Living community residential.
• Challenging behaviors for most improved or stayed the same.
• Those who chose community settings were more likely to have friends, visit people they cared about, and have friends visit them.
• A year in, all families and guardians said they were confident the participant was safe in their new home.
• Numerous families “noticed their family members seem to be happier.”

2022 – Most recently, the state closed part of Rainier School after it was de-certified and federal funds were pulled. From 2022 to 2023, 57 residents transitioned out. Again, they were given the choice of a community placement or transfer to another institutional setting, and support during and after the transition.

This isn't to say transitions are easy. But we do have experience. In 2022, DSHS developed a process guide, quality framework, a heightened review protocol, and a transition stabilization protocol. During the transition, staff continued to be available to spend time in the new resident’s home after the move, and family mentors with lived experience continued to offer crucial resources to families and guardians of those leaving, including helping them understand the process and learn about community supports available.

Stability is a critical care component for many – whether they live and receive support in an institution or in a community setting. But we can mitigate, we can plan, and we can pace the transition.

Build the future

The Arc supports community. This is no secret. We are driven by the fundamental belief that everyone deserves to write their own life story. That means:

• Real access to education
• Meaningful employment
• Quality healthcare
• Genuine community connections

Some comments heard in hearings, executive sessions, and floor speeches disregard the tremendous work of thousands of people with IDD, their family members, and professionals to make community inclusive.

We DO have a network of community services, and we need legislators to learn about it, invest in it, and help us address and improve the gaps.

This quote from a 2003 state report stands out:

“At this point it is generally accepted that with very few exceptions, any person who lives in an RHC can live safely and well in the community, given the funding necessary to provide the supports needed.”

That same report found that the main barriers to phasing out institutions are NOT that people are too fragile to leave.

The barriers are:

• Lack of affordable and accessible housing for people with extremely low, fixed incomes
• Limited services available to people with challenging support needs or complex health

Those are solvable. Legislators have responded to the first, and we need them to engage - with urgency - on the second.

In the last two years they have put close to $50 million into IDD housing. In the next two-year capital budget, they are proposing up to $55 million for IDD housing. This can be used for new construction or renovation. 

For the second challenge, legislators need to stay focused, invest strategically, and keep the promise: Improve and expand community options so we can all thrive.

- Written by Ramona Hattendorf, Director of Public Policy and Civic Engagement at The Arc of King County

CANDIDATE EDUCATION: On state institutions, Washington is an outlier

Data: University of Minnesota

Institute on Community Integration

It is campaign season. That means people are running for office to represent you and make choices on your behalf. We are running a series of articles on topics we think candidates should know about. We hope they are also useful to you. Please share!

-

Most states do not run large institutions for people with IDD. We still do, and it's not clear why

-

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:

1. Address a severe workforce shortage so people can access providers and services.
   
2. 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.

Data: University of Minnesota

Institute on Community Integration

Over the last 50 years, the number of people with IDD nationwide living in large, state-run institutions fell from about 200,000 to about 18,000, with support shifting to home- and community-based settings.

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