Showing posts with label Operating budget; state legislature. Show all posts
Showing posts with label Operating budget; state legislature. Show all posts

Sunday, April 13, 2025

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

Testimony and comments spread misinformation and divert from meaningful improvement


Crowd rallies at the capital for community services; 2 people smile and hug; man smiles at store

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

Wednesday, April 7, 2021

BIG disappointment for DD advocates


Key developmental disability bill stalls in House Appropriations. Would have gathered data needed to fix funding levels for DDA services

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Developmental Disability Administration (DDA) waiver services in Washington state are capped. And every year, state legislators - your representatives - decide how many slots to offer. They do this without a courtesy caseload forecast to inform them about level of need. The budget process they use looks at the small number of people already served, and even then it is limited. For instance, the legislature does not consider what services people want but cannot access, either because they aren't on the right waiver or because they can't find a provider.

Legislators do not consider the equity implications for those never let in, or who spend years waiting. They do not consider the economic impact of their decisions on families and the larger community.

SB 5268 - sponsored by Senators Karen Keiser, John Braun, and Joe Nguyen - is important for fixing this. The bill is titled: Transforming services for individuals with intellectual and developmental disabilities by increasing the capabilities of community residential settings and redesigning the long-term nature of intermediate care facilities.

SB 5268 would help the state understand where investment was needed for DDA community supports. It passed the Senate unanimously and sailed through the Housing, Human Services & Veterans Committee in the House. There was strong, bipartisan support.

Then it hit House Appropriations, where it died.

Fourteen of the 33 members on the Appropriations Committee represent parts of King County. So this is disappointing. Our local legislators do not understand the impact their policy choices have on their constituents with I/DD and their families. Or they do understand, but do not prioritize action.

If you care about expanding and stabilizing supports in the community, we encourage you to contact your legislators, especially if they are on the Appropriations Committee, to let them know how disappointed you are that SB 5268/DDA services died, and ask for their support going forward.


BACKGROUND AND CONTEXT

SB 5268 is about gathering information that the state needs to plan for and fund DDA services appropriately. 

DDA services are Medicaid long-term services for people with intellectual and developmental disabilities (I/DD). There is a federal match with Medicaid, so the more the state invests, the more the federal government invests. Community services are funded through a home- and community-based services (HCBS) waiver. This means people waive the right to receive support in an institution and instead request support in the community.

Currently, we are 39th in the nation in funding for community supports overall for people with intellectual and developmental disabilities, and 41st when it comes to funding HCBS waiver supports for people with I/DD. Less than 30 percent of people who meet the federal definition for needing DD waiver supports get them in our state. Supports that help individuals develop and maintain essential life skills are funded through the DDA waivers. Underfunding them directly impacts the ability of people to live and participate in their community.

The bill was funded in early versions of the Senate budget proposal, but the associated line items do not appear to be part of current budget discussions. Specific items that would now go unfunded include:

  • Courtesy forecasts of those who are assessed as eligible, and have requested services for, the Individual and Family Services (or IFS), Basic Plus, and Core waivers, and supported living services; and to produce a courtesy forecast of the number of individuals expected to reside in State-Operated Living Alternatives.

  • Funding and staffing to examine and report on a variety of topics, including but not limited to, the need for community respite beds and crisis stabilization services; to study Medicaid rates for contracted community residential providers; to develop uniform quality metrics for residential settings; and to establish a staffing plan to achieve a case management ratio of 1:35. Funding is also sufficient for rental assistance for individuals who face eviction caused by the transfer from subsidized housing to an Intermediate Care Facility.

  • Funding to perform a review of practices in other states and identify options to improve the Department of Social and Health Services practices related to client eligibility, services and managing clients.

Recently, the state crafted a plan to stabilize and grow community supports and rethink the way we use intermediate care facilities (ICFs). These facilities, as well as nursing homes for people with I/DD, are located at the state's four Residential Habilitation Centers. Years ago, people moved into RHCs for long-term stays. Medicaid now views ICFs as short-term facilities for active treatment and Washington state is in the process of adapting.

"Habilitative" services help a person keep, learn, or improve skills and functioning for daily living. This is in contrast to "rehabilitative" services, which help a person keep, get back, or improve skills and functioning for daily living that have been lost or impaired due to injury or illness.

Generally, the habilitative supports available through the DDA (commonly called "community supports" or "DD supports") are not available outside the Medicaid HCBS waivers or through private health insurance. If the state under-funds and doesn't pay for enough slots, people who are otherwise eligible simply lose access to them. Currently, there are about 14,000 people on a No Paid Services list. They are eligible for DDA supports but cannot access them because the state has chosen not to fund or track the number of waivers needed.

Wednesday, March 31, 2021

Drop the Cap - Special Education Funding 2021


This letter was originally published on our Facebook page.

re: Special education. An open letter to state budget writers
 
Dear Washington State Legislators.
 
#DropTheCap. Please.
 
Some of you are recently elected and may not know: For years, Washington legislators have refused to allocate special education funds for all students who qualify.
 
And yes, the active verb is intentional. The issue has been flagged. Bills have been introduced. And no action ensues. It is a decision by leadership.
 
Districts with “too many” students with disabilities get less money, per student, to spend. The communities hardest hit? Small, rural schools. This opinion piece explains how it plays out, and calls out federal CDC data on national averages for youths with disabilities in urban and rural areas. (Spoiler: WAY higher than 13.5% in rural areas). https://www.spokesman.com/.../sima-tarzaban-thorpe-and.../
 
The cap is on funded enrollment. In the 1990s, the state decided no school district should have more than 12.7% of full-time enrolled students getting special education services. A few years ago, legislators increased it to 13.5%
 
Statewide, today, less than 13% of full-time enrolled students require special education services. So, no problem, right?
 
WRONG.
 
That state percentage is made up of LOCAL school districts and charter schools where special education enrollment ranges from 2% of FTE students, to more than 20%. The state’s budget trick leaves more than 4,000 students out of the allocation.
 
In 2019, a legislator who represents small, rural districts wanted to fix this. The price tag? About $39 million, annually. The bill went nowhere.
 
When asked, legislators often respond: schools can apply for safety net funding. And this is true. But let’s unpack it.
 
In 2019, the cap affected 96 school districts/charter schools. Only 8 got assistance through Safety Net “community impact” funds. Total awarded: $2.6 million. 
 
Savings to state for this budget trick? $36.4 million (Source: https://www.k12.wa.us/.../fina.../safetynet/SNetApps1819.pdf)
 
These schools had to prove there was a reason WHY there would be more than 13.5% of FTE students requiring special education. Like maybe there is a group home nearby for kids with disabilities. Simply having students with disabilities who qualified and needed special education services isn’t enough.
 
The Safety Net is mostly used for high impact individuals – that is, students who require more expensive supports. In 2019, $76 million in Safety Net funds for 3,308 high impact students were awarded. Which is great … only what about those 4000-plus students who simply live in the wrong place?
 
And (we have to ask) how much of those excess costs is attributed to removing students from local schools and sending them to “non public agencies.” (It’s a thing.)
 
Here is the size of districts/charter schools exceeding the cap last spring:
  • 82 had fewer than 1,000 students, total enrollment
  • 14 had more than 5,000, total enrollment
  • Of those 14, just 2 had enrollment over 10,000
  • The 20 districts MOST over the cap had an average enrollment of about 210 students.
This isn’t a West of the Mountains suburban issue. 
 
 Here is a sampling of how this plays out. Of schools last year:
  • Lake Washington had $9,507 to spend, per student requiring special education
  • Mercer Island: $9,313
  • Bellevue: $9,302
  • Spokane (over the cap): $7,990
  • Tiny Orient (total 47 students enrolled, also over the cap): $4,349
 
So, our ask. Look out for those kids who aren't in your legislative districts. Kids tucked into the nooks of our majestic state - on the peninsula, in the far southwest, or far northeast. And in a few hard-pressed urban districts.

In the budget proposals for 2021-23, the House has a $53 million increase for special education – with little direction on how to spend it other than in alignment with IDEA. The Senate sets aside $48.7 million for the Safety Net (in addition
 
Wouldn’t it be great to apply that money on a down payment to #DropTheCap and fund all students who require special education services? 
 
Then, the state could seal the deal next budget cycle with funds from the capital gains tax (assuming it passes).
 
We say: Drop the cap!
 
Kindest regards.
The Arc of King County and like-minded special education advocates