We completed the 2021 legislative session on time!
The Operating Budget, Capital Budget and Transportation Budgets have all been delivered to the Governor where he can sign them into law, veto parts of them, or veto the entire budget.
The Operating Budget is where the state designates funding for services and supports they provide to the citizens of Washington State. As this is the biennial budget, it is supposed to fund these services for the next two years.
The Operating Budget was favorable for many of the services for people with intellectual and/or developmental disabilities (IDD). Our primary issue was the asking for more community placements so that people won’t have to go to an institutional placement. There are already more than 70 individuals with IDD who are stuck in the Residential Habilitation Centers (RHC) because there is no placement for them in the community. Although there is a funding for additional State Operated Living Alternatives (SOLA), we have a severe shortage of affordable, accessible homes to create the SOLAs. The challenge will be finding the housing.
In December 2018, a report published by our state’s Developmental Disability Ombuds, “Stuck in the Hospital”, alerted legislators to the crisis of people with DD residing in hospitals with no medical need. Often, providers and families could no longer support the individual’s behavior challenges and were left with no other alternative but to take them to an Emergency Room and refuse to take them back home. The budget addresses this by transitioning people with IDD from hospitals to Rainier School. This is not what would be best, as people want to be in the community, but by going there and staying there for 90 days, it guarantees them a waiver placement to leave. The drawback is that people are already waiting to leave Rainier, but there is no community placement available.
Twelve new SOLA beds were funded for children and fifteen beds for adults, along with twelve beds in supported living and four beds in Adult Family Homes (AFH), but the problem is still finding affordable, accessible housing. For supported living, staffing is underpaid, so trying to find and retain staff is also a problem.
RHC versus a Waiver
Placement in an RHC is an entitlement if you meet the qualifications. Home and Community Based Services (HCBS) Waivers are offered to those who meet the qualifications for an RHC placement, but who agree to “waive” that entitlement and accept their services in the community. The budget did provide funding for new waiver slots for the following waivers:
- 100 Children’s Intensive In-home Behavior Supports (CIIBS)
- 923 Individual and Family Services (IFS)
- 467 Basic Plus
- 159 Core
- 3 Community Protection
Many of the Basic Plus waiver slots will be used for transition students leaving high school transition programs. Additionally, because COVID interrupted many student’s ability to finish in their last two years of their transition program, the legislature provided funding for them to stay longer.
Although this budget includes funding for a lot of services, the legislature pays for some of this through the 10% increased Federal Medical Assistance Percentage (FMAP) from Medicaid and from the American Rescue Plan. The increased FMAP funds are short-term, so they cannot be used for ongoing expenses, like waiver slots. Some of these funded services include a temporary rate add-on for providers, Personal Protective Equipment (PPE), one-time funding for durable medical equipment (DME), minor home renovations for mobility purposes, and additional training resources for caregivers and providers, and summer camps for people with IDD.
What did get funded in the Operating Budget?
In the budget for the Developmental Disabilities Administration (DDA) there were many other items that will help people with IDD:
- Community residential providers will receive a rate increase:
- $14,897,000 State Funds; $15,262,000 Federal Funds
- Fund employment providers to help transition people who are making sub-minimum wage to true employment:
- $523,000 State Funds; $227,000 Federal Funds
- Support a Peer Mentor program with one peer mentor at each of the four RHCs:
- $280,000 State Funds; $92,000 Federal Funds
- Increase the personal Needs Allowance for people with IDD in a residential placement:
- $34,000 State Funds; $21,0000 Federal Funds
- Purchase 4,394 devices for DDA clients and contracted providers who are using services remotely:
- $1,913,000 State Funds; $1,873,000 Federal Funds
In other agency budgets, additional funding will benefit people with IDD and their families:
- Project ECHO (Extension for Community Healthcare Outcomes), through the University of Washington, will include training related to people with autism and developmental disabilities. They must focus on supporting existing autism centers of excellence and disseminate evidence-based diagnoses and treatments to increase access to medical services for people across the state:
- $600,000 State Funds; $600,000 total
- Increased rates for adult dental services:
- $21,390,000 State Funds; $54,656,000 Federal Funds
- The Office of Superintendent of Public Instruction (OSPI) will fund an additional Special Education Parent & Family Liaison:
- OSPI will continue a work group to improve meaningful, equitable access for public school students, including special education, and their family members who have language access barriers:
- $75,000 State Funds; $114,000 Federal Funds
- $559,000 State Funds; $559,000 total
Based on policy bills that passed the legislature, the legislature funded these items:
- HB 1061 – Shared planning between DDA and Department of Children, Youth & Family (DCYF) for youth with IDD leaving the foster care system:
- $1,029,000 State Funds; $1,029,000 Federal Funds
- SB 5237 - Increase provider rate for the Early Childhood Education and Assistance Program (ECEAP):
- $14,930,000 State Funds; $14,889,000 Federal Funds
There were some studies funded in the budget that we hope will provide better data for the legislature moving forward. These include a study on community respite and crisis stabilization needs, community residential rates and planning to reduce DDA case manager caseload ratios to 1:35 instead of our current 1:75 (the highest in the nation). There is also an annual report due over the next two years as our state phases out sub-minimum wage certificates for people with disabilities. Self-advocates worked hard this year to pass SB 5284 to phase out the 14c certificates that allowed employers to pay people with disabilities as little as two cents an hour! Additionally, there is a study funded in the Capital Budget to look at community-based housing needs of adults with IDD and to make recommendations on how to improve housing stability and capacity.
There were some new things we were surprised to see in this budget. The Dan Thompson Community Account used to be a Trust that could only be used for IDD family support and supported employment. As a trust, that meant the principle could not be spent, only the interest. Last year, the legislature changed its designation to an account, rather than a trust, with $1,000,000 going into the account each year for a broader range of IDD services. This year, using the 10% increase in FMAP funds, they added an additional $50 million! It is not clear yet how they will spend that money before March 31, 2022.
Another addition in the Operating budget was $10 million for the Housing Trust Fund (HTF). The HTF has a DD Set-aside in the Capital Budget that is used to build or remodel buildings (see below) that must be used for people with IDD. We believe this money for the HTF may be used for home modifications, but are not sure, as this has not appeared in the Operating Budget before.
What about the Capital Budget?
The Capital Budget is what pays for building or construction projects. The ability to find safe, affordable, and accessible housing for individuals with IDD is very difficult because of the fact that so many rely on Supplemental Security Income (SSI) as the primary source of income. The HTF provides funds for the construction, acquisition or rehabilitation of housing units every year for people below 80% of the average median income. In 1993, the Legislature created the DD set-aside within the Housing Trust Fund that provides funding specifically for housing for individuals with DD. This year’s budget has $5 million in the Set-aside, in addition to the $10 million mentioned above in the Operating Budget.
The most controversial part of the Capital Budget is $120 million to build a new nursing facility on the grounds of Fircrest School (one of the RHCs) for just over one hundred people. That is $1 million dollars to build one room for each person and does not include any of the operating costs! The current nursing facility at Fircrest is badly deteriorating and is not safe for people. Community advocates offered a proposal to build community homes for people who need nursing care around the state at a much lower cost. The legislature refused to listen to community advocates and are proceeding with the multi-million dollar institution for nursing care.
Why is this a big deal?
- All states are downsizing institutional care for people with IDD. Washington State is the ONLY state building a new institution, even though we only have about 500 people living in an RHC and more than 70 of those residents have asked to move to the community, but can’t because there are no open community placements.
- 17 states have already closed all their state institutions and provide everyone with their services in community settings.
- Federal policy is moving away from large congregate care. The current RHCs are always at risk of decertification and some programs there have been decertified and forced to close.
- People with IDD who need nursing care do not want to have to move to Shoreline or Yakima, far away from family and friends to get nursing services in an institution.
- Advocates proposed spending $50 million (less than half of the new institution’s cost) to develop 25 four-bedroom/four-bathroom homes for 100 people in the community throughout the state.
- About 500 clients (1%) of DDA clients still reside in an RHC, 44,439 of clients (90%) live with parents/family, 3,409 (7%) live in community settings and 787 clients (2%) are homeless or it is not known where they are living (based on data from DDA October 2020).
- Although only 1% of DDA clients live in an RHC, they use 14% of the DDA budget.
- DDA clients who need nursing level of care can and do live successfully in the community: See Julie Clark https://www.youtube.com/watch?v=wDRNMXf90OY
The Capital budget does include a small amount of money to pre-design four or five community nursing homes and a 30-bed nursing facility.
See the Capital Budget and Operating Budget side-by-side charts at https://arcwa.org/billtracker and scroll down to the documents you want to see.
Bills of Interest: what policy changes were made?
Below are the policy bills that impact people with IDD which passed this session. You can learn more about any of them by clicking on the bill numbers below. You can also go to our web site at https://arcwa.org/billtracker
Here are some of the bills of impact to people with IDD that passed the legislature this year:
|Child welfare/dev disability||Foster youth eligible for DD services exiting the child welfare system||Rep Senn|
|Prison to postsecondary education pathways||Study pathway, prioritize academic & vocational skills for those qualified for IEP||Rep Leavitt|
|Students w/seizure disorders||Create individual health plans for students with seizure disorders, train staff||Rep Kloba|
|Create behavioral health consumer advocacy||Create behavioral health consumer advocacy office, work with DD Ombuds||Rep Simmons|
|School attendance||For absences, conference with parents, IEP team members, provide language supports||Rep Ortiz-Self|
|Long-term services/emergency||DSHS rules for training flexibility during state of emergencies, extend background checks||Rep Tharinger|
|Lead in drinking water||Taking action to address lead in drinking water||Rep Pollet|
|Improve health, safety, and quality of life in LTC||Due to COVID, keep detailed client roster, 24 hour access to family, have disaster plan||Rep Bateman|
|Families with allegations of abuse or neglect||Protections for parents accused of abuse before their child is taken away||Rep Ortiz-Self|
|Permissible use of force||Officers must consider behavioral or cognitive disability, or language barriers for use of force||Rep J. Johnson|
|Civil protection orders||Consolidates protection orders, including for vulnerable adults, under a new chapter||Rep Goodman|
|Expand health care workforce eligibility||Allow unsupervised access for people with criminal records to care for people with DD||Rep Simmons|
|Capacity to provide informed consent||Defining who does not have the capacity to make health care decisions||Sen Pedersen|
|Develop comp school counseling programs||Comprehensive counseling programs to include kids of color, w/disabilities and more||Sen Mullet|
|Schools/equity training||Training in equity, cultural competency, and racism in the public school system||Sen Das|
|Expand child care & early childhood development||Creates a new account for legislative funding for ESIT and makes ECEAP pilot permanent||Sen C. Wilson|
|Eliminating subminimum wage certificates||Eliminating subminimum wage certificates for persons with disabilities||Sen Randall|
The bill that was most important to community advocates was SB 5264, which was sponsored by Senator Karen Keiser, Senator John Braun and Senator Joe Nguyen. This bill would have accomplished a number of things of critical importance and made it through the Senate, but not through House Appropriations. Advocate will be back next legislative session to get it over the finish line. The title of the bill is “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”. In summary, the bill would:
- Direct the Department of Social and Health Services to examine the need for community respite beds and crisis stabilization services (some funding for this study was included in the Operating Budget);
- Study Medicaid rates for contracted community residential service providers;
- Develop quality metrics for community residential and Residential Habilitation Centers;
- Coordinate services across systems;
- Establish a staffing plan to achieve one case manager per 35 clients;
- Direct the Joint Legislative Audit and Review Committee to review the Developmental Disabilities Administration's eligibility procedures;
- Establish a joint legislative executive task force to redesign the long-term nature of Intermediate Care Facilities (ICF) and;
- Establish a network of smaller, skilled nursing facilities in community settings to serve individuals with IDD.
- Two new forecasting requirements would be established for DDA services. The Caseload Forecast Council (CFC)would forecast the number of eligible individuals who have requested a service through the IFS and Basic Plus waivers. Additionally, the CFC would provide a courtesy forecast of the number of individuals who are expected to reside in SOLAs.
- DDA would work with the WA State Developmental Disabilities Council (DDC) to develop and disseminate best practices related to serving individuals with co-occurring IDD and mental health conditions;
- Work with Washington State's Apprenticeship and Training Council, colleges, and universities to establish medical, dental, nursing, and direct care apprenticeship programs that would address gaps in provider training and overall competence;
- Devise options for consideration by the Governor and the Legislature to prioritize funding for housing for individuals with IDD when a lack of affordable housing is the barrier preventing an individual from moving to a least restrictive community setting;
- Collaborate with stakeholders to examine existing guardianship and protective proceedings laws and recommend necessary changes to allow people with IDD to live as independently as possible in the least restrictive environment;
- Create a joint executive and legislative task force to make recommendations for the redesign of ICFs from a long-term care model to a short-term crisis intervention model, and to establish a network of smaller, skilled nursing facilities in community settings throughout the state designed to serve individuals with IDD;
- DSHS would work with the Health Care Authority and managed care organizations to establish the necessary agreements for clients with IDD who live in the community to access ICF-based professionals to receive care covered under the state plan;
- DDA would develop procedures to provide clear information to individuals and families that placement in an ICF is temporary, ensure discharge planning begins immediately upon placement of an individual within an ICF, present the individual with the option to receive any available crisis stabilization services in the community prior to placement in an ICF, and convene the individual's care team to review and make changes to the care plan when the individual has not achieved crisis stabilization after 60 days; and work with community residential providers to provide a 90-day bed-hold for individuals who are transferred from the provider to an ICF, and pay rent for individuals who face eviction due to failure to pay caused by the transfer from subsidized housing to an ICF.
We need to really focus next year on getting this bill passed. One thing that may help is a bill being drafted at the Federal level. The Home and Community Based Services Access Act (HAA) is a bill being drafted by Congresswoman Debbie Dingell. Years ago, institutional care was created to provide services for people with developmental disabilities, as nothing was available in the community, not even school. Because we have now created community-based services to meet people’s needs, we need to end the institutional bias for services and make community-based services the entitlement. This bill would require coverage of home and community-based services under Medicaid, ridding our state of its institutional bias as well of getting rid of our waiting list for DDA services (called the No Paid Services caseload and has almost 15,000 people waiting for community services).
The stated purpose of the bill is to require coverage of home and community-based services (HCBS) under a State plan or waiver under title XIX of the Social Security Act for the following reasons:
- In order to fulfill the purposes of Americans with Disabilities Act to ensure people with disabilities and older adults live in the most integrated setting.
- To eliminate waiting lists for HCBS, which delay access to necessary services and civil rights for people with disabilities and aging adults.
- To build on decades of progress in serving people with disabilities and aging adults via HCBS and not in institutions, nursing homes or other congregate settings.
- To fulfill the purposes of the Medicaid program to provide medical assistance for those whose income and resources are insufficient to meet the costs of necessary medical services, and to provide rehabilitation and other services to help such families and individuals attain or retain capability for independence or self-care.
- To eliminate silos and ensure that people with all kinds of and with multiple disabilities, including intellectual disabilities, developmental disabilities, mental health disabilities, physical disabilities, and substance use disorders, and aging adults, receive the services they need to live in their communities.
- To streamline access to HCBS by eliminating the need for States to repeatedly apply for waivers.
- To continue to increase the capacity of community services to ensure people with disabilities and aging adults have safe and meaningful options in the community are not at risk of unnecessary institutionalization.
- Because decades of research and practice show that everyone, including people with the most severe disabilities, can live in the community with the right services and supports.
- To support over 65,000,000 unpaid family caregivers who are often providing complex services and supports to aging adults and people with disabilities because of a lack of affordable services, workforce shortages, and other inefficiencies of the Medicaid system.
- To improve direct care work quality and address the decades long workforce barriers for nearly 4,600,000 direct care workers giving support to people with disabilities and aging adults in their homes and communities.
- To eliminate the race and gender disparities that exist in accessing information and HCBS and to prevent the unnecessary impoverishment and institutionalization of black and brown individuals with disabilities and aging adults.
You can view the draft bill at https://debbiedingell.house.gov/uploadedfiles/hcbs_access_act.pdf.
What Do We Do Now?
Now is a great time to send thank you notes/emails to legislators for sponsoring bills that passed or for budget items that were funded and are important to you. One way to stay informed is by connecting to your local chapter of The Arc, your Parent Coalition and other DD community groups. This is also a good time to meet with your legislators while they have time for longer meetings. It is also important to meet with your members of Congress and tell them how important the HAA would be for our state (see above). Stay connected! Let us know what you need!
- Read the Olympia Reporter for in-depth news happening in Olympia.
- Sign up for alerts from The Arc of Washington’s Action Center.
- Be sure to follow TheArcofWA on Twitter.
- Become a fan of The Arc - Washington State on Facebook
- Connect with your Congressional Representatives
- Sign up for The Arc’s News to Know to keep current on issues.
Questions? Need more information? Email Diana@arcwa.org.
Remember, change is being made by those who show up!
Whether you show up in person, by phone, email, Zoom or social media, in just a few moments your voice can be powerful and make a difference!