Annual Report on Activities SFY 2020 — Office of Developmental Disabilities Ombuds

Issuer: Congressional materials
Document type: Annual Report

Summary

The Annual Report on Activities for SFY 2020 of Washington State's Office of Developmental Disabilities Ombuds, addressed to members of the Legislature and dated October 30, 2020. The cover letter from the State Developmental Disabilities Ombuds reports 129 new individual complaint investigations, 199 monitoring visits and outreach to more than 8,000 people, with 5.5 full time staff. The report makes six policy recommendations, including clarifying the DD Ombuds statute, preventing inappropriate hospitalization of people with developmental disabilities, and improving services for youth in foster care. It describes complaints carried over, resolved and pending as of June 30, 2020, the shift to telephone monitoring visits during the pandemic, and legislative work such as House Bill 1651/SB 5843 on DDA client rights.

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Cite this document

“Annual Report on Activities SFY 2020 — Office of Developmental Disabilities Ombuds.” Original at app.leg.wa.gov. Archived at Pandemic Darlings, https://pandemicdarlings.com/source-documents/2020-dd-ombuds-annual-report-sfy-2020-final-9a3d6178-3382-4e31-a480-e35a2e9/, SHA-256 a05aa0e20d7a905370b804fab80d77461c267c127027fa6eed22d9d4b6f7d5a2.

Full text

Annual Report on Activities SFY 2020
Office of Developmental Disabilities Ombuds
Informing the Washington State Legislature’s work to ensure safe,
quality developmental disabilities services.

"The Legislature finds and declares that the prevalence of the abuse
and neglect of individuals with developmental disabilities has become
an issue that negatively affects the health and well-being of such
individuals.” SB 6564 (2016)

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Members of the Legislature October 30, 2020
Governor Jay Inslee
Cheryl Strange, Department of Social and Health Services
Evelyn Perez, Developmental Disabilities Administration

We are here to assist people with developmental disabilities, no matter where in Washington
State they live, to resolve their complaints and address abuse and neglect.

The legislature created the DD Ombuds program in response to abusive and neglectful
conditions for people with developmental disabilities. The Office of Developmental Disabilities
Ombuds closed out another year of complaint resolution, monitoring, outreach and training,
and systemic policy work.

With 5.5 full time staff, located in three offices around the state, the DD Ombuds conducted
129 new individual complaint investigations. We conducted 199 monitoring visits across the
state to review facilities, residences, and programs where people with developmental
disabilities receive services. We also reached more than 8,000 people across the state to talk
about our services, show our videos about the DD Ombuds and self-advocacy, give
presentations about rights and responsibilities. We produced and gave out written materials,
made observations, and listened.

We published a report, “Improving Services for Youth with Intellectual/Developmental
Disabilities in Foster Care” with recommendations for improved systems. We also published a
report detailing ways to expand DD Ombuds services.

We worked collaboratively with self-advocates, the state and legislature to pass DDA client
rights legislation. Client rights are now in statute! We brought systemic issues to the attention
of the state and positive changes were made in the lives of people with developmental
disabilities.

We had to find new ways to do our work when the pandemic hit. As we look to the future, we
see additional ways to connect with individuals who have concerns about, or experience abuse
and neglect. We see opportunities to engage in systemic policy work to address the prevention
of, and response to, abuse and neglect of people with developmental disabilities. Thank you for
this opportunity to serve and empower people with developmental disabilities.

Betty Schwieterman, State Developmental Disabilities Ombuds
Office of Developmental Disabilities Ombuds
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Table of Contents

Executive Summary Policy Recommendations ............................................................................... 4
Exective Summary of Office of Developmental Disabilities Ombuds Work SFY 2020 ................... 6
Office of the DD Ombuds Annual Report SFY 2020 Introduction................................................... 9
Powers and Duties of the DD Ombuds ........................................................................................... 9
Budget and Staffing SFY 2020 ....................................................................................................... 10
DD Ombuds Program Approach ................................................................................................... 10
Priorities ........................................................................................................................................ 11
Objectives ..................................................................................................................................... 11
Information on Rights and Responsibilities .................................................................................. 12
Complaints .................................................................................................................................... 13
Monitoring .................................................................................................................................... 17
Systemic Change Outcomes.......................................................................................................... 18
Reports on Systemic Issues ........................................................................................................... 22
Detailed Recommendations to the Legislature ............................................................................ 24

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Executive Summary

The Legislature created an independent Office of Developmental Disabilities Ombuds (DD
Ombuds) to monitor and report on services to persons with developmental disabilities. The DD
Ombuds has the authority to investigate complaints, monitor services, and report on State
services utilized by children and adults with developmental disabilities. The DD Ombuds also
has the duty to make recommendations for service improvement to State agencies, the
Governor and the Legislature. A summary of the DD Ombuds recommendations to the
Governor and Legislature is below, followed by summary of the work of the DD Ombuds for the
state fiscal year (SFY 2020).

Summary Policy Recommendations to the Legislature and Governor
Recommendation 1. – Clarify Office of Developmental Disabilities Ombuds Statute
Problem: DDA will only provide the DD Ombuds with contact information for people residing in
state-licensed facilities. The DD Ombuds does not have contact information for people receiving
residential services in certified settings, or receiving in-home services, or people who are
eligible for DDA services but not able to access them. This is not what the legislature intended
when they created the DD Ombuds to help prevent abuse and neglect. The DD Ombuds is
proposing a statute change to fix this problem and wants to ensure the support of the DD
advocacy community.
Currently, the person with developmental disabilities or their legal guardian may not learn
about the DD Ombuds unless their DDA Case Resource Manager or their state contracted
service provider tells them about DD Ombuds services.
If the DD Ombuds does not have the ability to reach out to people with developmental
disabilities receiving state services, people might never learn about the DD Ombuds or how to
contact the DD Ombuds if they have a complaint.
Proposal: A statute change is necessary to clarify the legislature intends the DD Ombuds to
have access to names and addresses of DDA clients in order to carry out its duties.

Recommendation 2. - Invest in quality community supports and services for children and
adults with developmental disabilities to reduce use of crisis services.

Problem: The long-term care system in Washington State is ranked as one of the best in the
country. Not so for individuals with developmental disabilities: Washington State ranks 37th in
the country for fiscal effort for services for individuals with developmental disabilities according
to the 2017 State of the State Report. Staff turnover is close to 50% in residential supported
living services, and likely higher since the pandemic. The highest number of complaints the DD
Ombuds handles concerned access to DDA services, and discharge/transfer. The DD Ombuds
sees a pattern of both children and adults with behavioral supports needs who are unable to
access needed services to stay in their own home or at home with a parent. Budget cuts to the
service system have been proposed as a result of the pandemic.
Proposals:
a. Preserve funding for services to children and adults with developmental disabilities.
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b. Mandate caseload forecasting for DDA community supports and services.
c. Increase direct service workers wages in supported living to reduce turnover and increase
retention of well-trained staff.
d. Address the needs of the 14,000+ clients DDA has identified who asked for services but are
waiting (no paid services caseload) by increasing availability of waiver services. Identify
children and youth on the no paid services caseload, under the age of 21 and on Medicaid
and determine if there are unmet needs and whether those can be met under the state
Medicaid plan through EPSDT.

Recommendation 3. - Prevent inappropriate hospitalization of children and adults with
developmental disabilities.

Problem: Hospitals are being used as crisis placements for children and adults with
developmental disabilities across the state. Since July 2018, the DD Ombuds has worked with
over 70 children and adults with developmental disabilities who were or are stuck waiting in a
hospital without any medical need because Developmental Disabilities Administration (DDA)
cannot provide them with an appropriate residential placement in the community.
Proposals:
a. Require DDA to expand the data collected about all people with developmental disabilities
who are taken to the hospital to find out why people are stuck there. This includes people
coming out of residential service settings and private homes.
b. Expand the number and types of specialized providers. DDA should analyze the number and
type of specialized providers needed to meet the current demands for service in each
Region. Using this data, DDA employ or contract directly with specialists who can provide
the following services throughout the state: Psychological assessments; Consultation on
behavior supports for family caregivers, staff, and medical providers; Behavior supports for
people with developmental disabilities living in hospitals; Therapeutic mental and
behavioral health services; and Medication management
c. Direct DDA to identify and remove barriers to utilization of behavioral support, such as in-
home consultation, for children and adults who reside with parents.
d. Fund increased diversion bed, emergency respite or other bed capacity so individuals with
developmental disabilities have an appropriate placement available if they experience a
crisis and need residential services.

Recommendation 4. - Improve services for youth with intellectual/developmental disabilities
in foster care

Problem: There are children and youth with developmental disabilities in the Title IV-E foster
care system who could be better served. There are concerns about how the lack of DDA-paid
services might disadvantage youth with developmental disabilities while they are in Title IV-E
foster care placements and while they are transitioning from a foster care setting to an adult
residential setting. The DD Ombuds gathered information about how other states serve
children with developmental disabilities in foster care in its report “Improving Services for
Youth with Intellectual/Developmental Disabilities in Foster Care.”

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Proposal: The legislature can direct the DDA and DCYF to identify gaps in services for these
children and report back to the legislature with a plan to improve services for children and
youth with developmental disabilities.

Recommendation 5. - Identify and close gaps in mental health services for people with
developmental disabilities

Problem: The integration of Medicaid health care and behavioral health care has created gaps
in mental health services for individuals with developmental disabilities. This major overhaul of
the health care system did not adequately prepare to address the multifaceted needs of people
with developmental disabilities.
Proposal: Create a mental health service system inclusive of people with developmental
disabilities. Support HB 1394 Sec. 10 workgroup generated recommendations regarding
proposals to identify and examine current gaps in mental health services for children and adults
with developmental disabilities. Examine recommendations from the Children & Youth
Behavioral Health Work Group for improvements to services for individuals with developmental
disabilities.

Recommendation 6. - Ensure the State Auditor’s Office continues performance audits of long-
term care training partnership.
Problem: The Washington State Auditor’s Office proposed elimination of the mandated
performance audits of the long-term care training program on a two year cycle.
Proposal: Maintain performance audits of the work of the training partnership and long-term
care worker program on a regular basis.

Executive Summary of DD Ombuds work for SFY 2020

Outreach, Training, Education and Information on Rights and Responsibilities
The DD Ombuds reached 8,012 people with information about the DD Ombuds services,
trainings on topics such as how to navigate the service systems, self-advocacy and problem
solving, and responding to abuse, neglect, and sexual assault through presentations and
outreach at 63 events. One event was live-streamed and had 6,000 participants. The DD
Ombuds provided 152 detailed I&R services to people to assist them in resolving their issue.
The DD Ombuds developed resources to inform people with developmental disabilities, their
families, service providers, and the community about the DD Ombuds and rights and
responsibilities. DD Ombuds website (www.ddombuds.org) posted 28 blog posts from around
the state. New this year are two self-advocacy story videos, “Advocate for Your Rights” and
“Never Give Up and Keep on Trying.” (https://ddombuds.org/videos/.)

Complaints
This fiscal year the DD Ombuds carried over 60 complaints from SFY 2019, responded to 129
new complaints, resolved/closed 162 complaints and had 27 pending as of June 30, 2020.

The majority of complaints concerned individual care issues (includes access to DDA services
and care plan individualized assessments); administration issues (includes discharge/transfer
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from hospitals and from DSHS funded residential programs); autonomy and exercise of rights
(includes dignity/respect, preference, choice and rights, privacy); abuse, sexual abuse, neglect;
followed by issues of quality of life and housing.

Monitoring
The DD Ombuds made 199 monitoring visits across the state this past fiscal year to meet and
talk with individuals with developmental disabilities and review facilities, residences, and
programs. Monitoring visits accomplished several purposes. People who receive services, their
families, their staff, and the provider administration receive information about the DD Ombuds.
The DD Ombuds gives out materials that are easy to keep such as refrigerator magnets, door
hangers and coasters that have information about the DD Ombuds and client rights. The DD
Ombuds observe living conditions, and staff interactions and responsiveness to the residents
they support. The DD Ombuds also received complaints, initiated complaints and identified
locations for follow up monitoring. Once the pandemic hit the DD Ombuds stopped in-person
visits and developed and tested a telephone visit protocol and began phone visits.

Summary of Systemic Issue Reports
The DD Ombuds continues to utilize its systemic reports to advocate for systemic changes.
Stuck in the Hospital - The DD Ombuds published the “Stuck in the Hospital” report in
December 2018. The report was a response to the high volume of complaints the DD Ombuds
received about adults with developmental disabilities stuck in a hospital without any medical
need. The report makes specific recommendations to the State and the Legislature to address
this tragic, ongoing issue.

Children and Youth with Developmental Disabilities in Foster Care - “Improving Services for
Youth with Intellectual/Developmental Disabilities in Foster Care” published in SFY 2020, the
report makes specific recommendations for the Developmental Disabilities Administration and
the Department of Children, Youth and Families to work together to improve services for
children and youth with developmental disabilities in foster care.

Office of Developmental Disabilities Expansion Plan
The DD Ombuds proposed in November 2019, an expansion plan is based on the DD Ombuds
experience providing services for the past two and a half years, analysis of the LTC Ombudsman
Program model and stakeholder input. The plan proposes a graduated increase in paid staff and
use of volunteers over the next three biennium. Phase one would be to stabilize the certainty of
the funding for the program by moving the DD Ombuds budget into the maintenance budget.
Then in SFY 2022-2023 a volunteer coordinator, self-advocacy educator and three DD Ombuds
are added. Staffing is increase by 3 DD Ombuds and an Office Assistant the next two biennium.

Systemic Change Outcomes
Policy, Practice, Procedure: During SFY 2020 the DD Ombuds reports seven major systemic
changes related to supported living client rights during provider provisional certification or
other enforcement actions; Privacy protections in the supported living referral process; DDA
Client Rights created in statute; Emerging Leaders – Access to the legislative process;
Preservation of Rights - Guardianship Documentation; Community Protection client
participation in treatment team meetings – “Nothing About Us without Us”.
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Legislative: The DD Ombuds also made legislative recommendations and had successful
outcomes including: House Bill 1651/SB 5843 concerns the rights of clients of the
developmental disabilities administration. SB 6205 is an act relating to preventing harassment,
abuse, and discrimination experienced by long-term care workers. The DD Ombuds raised
concerns about the tone of the bill, the lack of definitions, potential client abandonment, client
privacy, and reporting requirements. HB2390 Respectful language. The DD Ombuds supported
this bill to revise language in a several statutes to reflect respectful language. This bill passed.
2SHB 2737 The DD Ombuds supported a bill, which passed, to add an organization representing
those with developmental disabilities to the children’s mental health workgroup. SB 6040-
Concerning the budgeting process for certain state waiver services for individuals with
developmental disabilities. SB 6287-Concerning guardianships and conservatorships. The
legislation would clarify the uniform guardianship act which would include creating supported
decision making for people with Intellectual and Developmental Disabilities. The DD Ombuds
testified in support of supported decision making as an alternative to guardianship that some
people would choose.
Washington Administrative Code (WAC): As part of its systemic reform work, The DD Ombuds
comments on Washington Administrative Code (WACs). The DD Ombuds provided comments
on WACs related to DDA services. WAC comments included: Intermediate care facilities for
individuals with intellectual disabilities ICF/IDD appeal rights: The DD Ombuds gave WAC
comments concerning ICF/IDD appeal rights. Comments identified areas for the need for
increased clarity, the need for definitions and timelines. Psychotropic medication: the DD
Ombuds gave comments on WACs concerning psychotropic medication. Concerns expressed
about the WAC not being person-centered, that references to documenting behaviors were
removed, that the provider is not required to report change in a person’s behavior to the
prescribing health care provider and concern a person on psychotropic medication will have
less access to positive behavior supports. These WACs are still under consideration. Overnight
planned respite: The DD Ombuds gave comments on the overnight planned respite WACs.
Concerns included clarity, timelines, adherence to person centered principles, and methods for
monitoring quality of services provided. Client Rights: The DD Ombuds worked with self-
advocates and the legislature to pass a Client Rights statute. DDA began pre-WAC stakeholder
work at the end of SFY 2020. The DD Ombuds comments recommended the WACs be written in
planning language and that no existing right be diminished.
Waiver Amendments: The DD Ombuds also commented on waiver amendments: Individual and
Family Services Waiver - The DD Ombuds gave comments to add clarity in the definition of
assistive technology. DD Ombuds comments on Home and Community Based Services (HCBS)
Waivers concerned transparency and accessibility of the stakeholder process; Access to
institutional level of care; Quality assurance and support for Case resource managers;
Communication access for individuals with Limited English Proficiency; Access to state plan
services, especially mental health services; Lack of coordination to obtain medical necessary
services for individuals under age 21; Informed consent for use of restraints; and Cost limits and
caps on CIIBs waiver.

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Office of Developmental Disabilities Ombuds Annual Report SFY 2020

Introduction
In 2016, the Washington State Legislature declared, “The prevalence of the abuse and neglect
of individuals with developmental disabilities has become an issue that negatively affects the
health and well-being of such individuals.” The Legislature created an independent Office of
Developmental Disabilities Ombuds (DD Ombuds) to monitor and report on services to persons
with developmental disabilities.

Background
The Washington State Department of Commerce awarded the non-profit, Disability Rights
Washington, through competitive bid, the contract to administer the DD Ombuds program.
Disability Rights Washington created a separate program to fulfill the contract. The DD Ombuds
contract began on May 25, 2017. Since then, the Office of the Developmental Disabilities
Ombuds has delivered DD Ombuds services in the state of Washington.

Services for people with developmental disabilities in Washington State
Developmental Disabilities Administration (DDA) is part of Washington State’s Department of
Social and Health Services (DSHS). DDA administers programs for children and adults with
developmental disabilities and their families to obtain services and supports based on individual
assessments, needs, and preferences. According to DDA data, there were 55,360 enrolled
clients as of June 2020. Of the enrolled clients, 27,784 were receiving services. DSHS and other
state agencies also administer services to children and adults with developmental disabilities.
The DD Ombuds has the duty and authority to investigate complaints, monitor, and report on
these services and make recommendations to State agencies, the Governor and the Legislature.

Powers and duties of the DD Ombuds
The Office of the Developmental Disabilities Ombuds has the duty to protect the interests of
people with developmental disabilities. The DD Ombuds has the authority and duty to carry out
the following:
• Provide information on the rights and responsibilities of people receiving developmental
disabilities administration services or other state services and on the procedures for
providing these services;
• Investigate, upon its own initiative or upon receipt of a complaint, an issue related to a
person with developmental disabilities. However, the DD Ombuds may decline to
investigate any complaint;
• Monitor procedures as established, implemented, and practiced by the department to
carry out its responsibilities in the delivery of services to people with developmental
disabilities;
• Review the facilities and procedures of state institutions, state-licensed facilities, and
residences which serve persons with developmental disabilities;
• Recommend changes, at least annually, to procedures for addressing the needs of
people with developmental disabilities to service providers, the department, and
legislators;

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• Establish procedures to preserve the confidentiality of records and sensitive information
to ensure the identity of any complainant or person with developmental disabilities is
protected;
• Maintain independence and authority within the bounds of DD Ombuds duties; and
• Carry out such other activities as determined by contract.

Budget and Staffing SFY 2020
State appropriation $643,000
Commerce administrative costs $32,150
DD Ombuds contract budget is $610,850

Staffing - The Office of DD Ombuds operates with 5.5 full-time equivalent staff in Olympia,
Seattle and Spokane offices.
State DD Ombuds - Betty Schwieterman - 1 FTE (Seattle)
Region 1 DD Ombuds and Legal Counsel - Lisa Robbe - 1 FTE (Spokane)
Region 2 DD Ombuds - Kathleen Chavey-Reynaud - 1 FTE (Seattle)
Region 3 DD Ombuds - Noah Seidel - 1 FTE (Olympia)
Self-Advocacy Educator - Tim McCue - 1 FTE (Olympia)
Office Assistant - Beth Beeman - .5 FTE (Seattle)

DD Ombuds Program Approach
The Legislature considered a proactive approach to DD Ombuds services. They recognized some
people with developmental disabilities are isolated and do not have the resources to reach out
for assistance. Therefore, the DD Ombuds' approach is to provide services and take complaints
in person as much as possible. This had to change in February with the revelation of the COVID
19 pandemic.

Pre-pandemic, the DD Ombuds visited people where they live or where they receive their
services to provide information, listen to their concerns, and help resolve complaints. The DD
Ombuds created protocol and began monitoring visits by phone in late spring of 2020.
However, many people with developmental disabilities do not use the phone or internet and
the DD Ombuds will search for new ways to connect. The DD Ombuds continues to take
complaints by phone and through a website complaint form.

The DD Ombuds resolves complaints at the lowest possible level. The DD Ombuds protects
choice, autonomy, and ensures people with developmental disabilities have access to advocacy.
The DD Ombuds promotes the well-being of people with developmental disabilities who receive
state services. All DD Ombuds services are resident-directed and person-centered. The DD
Ombuds operates within strict confidentiality protocols.

The DD Ombuds provides information on rights and responsibilities through presentations,
trainings, community events, videos, social media and the DD Ombuds website,
(www@ddombuds.org.) In the winter of 2020, the DD Ombuds moved trainings and events to
virtual platforms. The DD Ombuds and people with developmental disabilities create the
publications, videos, and website content.

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The DD Ombuds collects information from diverse stakeholders such as self-advocacy groups,
parent groups, provider organizations, and others to guide its work.

The DD Ombuds convenes quarterly an advisory committee, whose membership is comprised
in majority of people with developmental disabilities. The committee meets in person to review
stakeholder input and advise the DD Ombuds on priority setting, topics for systemic issue
reports, organizational structure to ensure a person centered, resident directed program, and
program expansion based on the Long-Term Care Ombuds model.

The DD Ombuds participates in state-led workgroups and regularly meets with state agencies to
exchange information and recommend policy and practice change to improve services for
people with developmental disabilities.

The DD Ombuds publishes an annual report on the work of the DD Ombuds including the types
of complaints received and resolved, facilities and residences visited, systemic issues addressed,
recommendations formulated and achieved, and outreach and trainings presented.

Priorities
The Washington State Legislature created the DD Ombuds because there are still high rates of
abuse and neglect against people with developmental disabilities. All people have the right to
be free from abuse and neglect. The DD Ombuds program is a way to have eyes and ears on the
ground to collect complaints, as well as find and fight abuse against people with developmental
disabilities.

The DD Ombuds prioritizes issues related to abuse and neglect of individuals with
developmental disabilities, including physical and sexual abuse, personal and financial
exploitation, physical, mechanical, and chemical restraint, verbal abuse, neglect, and self-
neglect. Other issues are addressed as resources are available.

Objectives
The DD Ombuds delivers person-centered, complaint-based services. The DD Ombuds helps
people understand their rights and responsibilities and helps people solve their complaints
about their services. The DD Ombuds monitors services and reports concerns to the state and
the Legislature. The DD Ombuds has the following objectives:

• Provide information on rights and responsibilities;
• Investigate complaints;
• Resolve issues at the lowest level possible through individual complaint resolution;
• Monitor service delivery and review state institutions, state-licensed facilities, and
residences;
• Report annually on DD Ombuds services to people with developmental disabilities to
stakeholders, the department, the Governor, and the Legislature;
• Publish reports on systemic issues to the Legislature;
• Affect positive change in services for people with developmental disabilities through
recommendations for changes in policy and procedures;

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• Develop and recommend a plan for growth to expand the DD Ombuds program based
on Long-term Care Ombuds model to include regional Ombuds, paid staff, and a
significant volunteer force.

The Work of the DD Ombuds
Information on Rights and Responsibilities
The DD Ombuds has the duty to provide information on the rights and responsibilities of
individuals with developmental disabilities, including the right to access Developmental
Disabilities Ombuds services. Information is provided in a variety of formats and locations
across the state.

1. Training, Education and Outreach - The DD Ombuds reached 8,012 people with
information about the DD Ombuds services, trainings on topics such as how to navigate
the service systems, self-advocacy and problem solving, and responding to abuse,
neglect, and sexual assault through presentations and outreach at 63 events. One event
was live-streamed and had 6,000 participants.

2. Information and Referral - The DD Ombuds provided 152 detailed I&R services to
people to assist them in resolving their issue. Examples of this type of I&R include
providing explanations about and referrals to services, processes for applying for or
requesting services including types of DDA services, the DDA eligibility process, the
types of DDA service plans, the process for applying for civil legal aid services, and
explanation and referral to the complaint resolution unit for abuse and neglect.

3. Resource Development - The DD Ombuds developed resources to inform people with
developmental disabilities, their families, service providers, and the community about
the DD Ombuds and rights and responsibilities. A tri-fold brochure about DD Ombuds
and two DD Ombuds videos are used in presentations and outreach. One video explains
the services of the DD Ombuds, and the other covers the importance of self-advocacy.
The videos are available on the DD Ombuds website in ASL, and with subtitles available
in English and other languages: Chinese (Simplified and Traditional), Korean, Somali,
Spanish and Vietnamese. The tri-fold brochure is now available in 8 languages and
Braille.

4. Website and Social Media - DD Ombuds website (www.ddombuds.org) posted 28 blog
posts from around the state. New this year are two self-advocacy story videos,
“Advocate for Your Rights” and “Never Give Up and Keep on Trying.”
(https://ddombuds.org/videos/.) The website also includes information, resources, how
to file a complaint, an on-line complaint form, and two videos in 7 languages and ASL.
The Office of DD Ombuds website has accessibility features including a built-in read
aloud screen. The DD Ombuds also has a social media site with almost 2,200 followers.
For the period of July 1st 2019 to June 30th 2020 the website has had 4,973 unique
visitors. Those users engaged in a total of 6,150 individual sessions, or individual times
they went to the website, with a continued average of 2 page views per session. This
culminates in a total of 10,769 total page views.
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Complaints
People with developmental disabilities and who receive services from the state are eligible for
services from the DD Ombuds. Individuals with developmental disabilities, staff or providers,
family members, guardians, or other interested individuals may make a complaint. The DD
Ombuds keeps the identity of those who make a complaint confidential.

Complaints are generated during monitoring visits (in-person and phone) to places where
people with developmental disabilities receive services, and from individuals with
developmental disabilities, parents or other family members, community members, or service
providers. The DD Ombuds receives complaints in-person, by phone calls or through the DD
Ombuds on-line complaint form. The DD Ombuds was not able to make as many in-person visits
because of the COVID-19 pandemic.

The DD Ombuds reviews, and may investigate, complaints on behalf of people with
developmental disabilities who receive state services. Complaints may relate to abuse, neglect,
exploitation, the quality of services, or access to services. Complaints regarding abuse or
neglect are prioritized for services.

In response to a complaint, the DD Ombuds may take steps to resolve the issue by talking with
others involved, monitoring a facility or residence, researching DDA policies or practices,
reviewing records, and interviewing witnesses or advocating on behalf of an individual or group
to resolve a complaint. Only issues where the DD Ombuds took action are listed below. The DD
Ombuds addresses other issues by providing information or referral services.

Complaints worked on in SFY 2020
SFY 2019 complaints carried over to SYF 2020
Number of complaints pending - 60

New July 1, 2019 through June 30, 2020
Number of complaints opened - 129

Closed July 1, 2019 through June 30, 2020
Number of complaints closed - 162

Pending as of July 1, 2020
Number of complaints pending - 27

This fiscal year the DD Ombuds carried over 60 complaints from SFY 2019, responded to 129
new complaints, resolved/closed 162 complaints and had 27 pending as of June 30, 2020.

The majority of complaints concerned individual care issues (includes access to DDA services
and care plan individualized assessments); administration issues (includes discharge/transfer
from hospitals and from DSHS funded residential programs); autonomy and exercise of rights
(includes dignity/respect, preference, choice and rights, privacy); abuse, sexual abuse, neglect;
followed by issues of quality of life and housing.

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Complaint locations included: own home, family home, Children’s Licensed Staffed Residential
home, Adult’s home with supported living services, Adult’s home with state supported living
services, Adult Family Homes, Residential Habilitation Centers, General Hospitals, and
Psychiatric Hospitals.

New Complaints (129) in SFY 2020 concerned people with the following issues
Note the number of complaints in each issue category does not necessarily correlate to the
seriousness of the issue system-wide. For example, the staff shortage complaint number is low,
however staff shortage and staff turnover is well-documented as a problem in residential
services. DD Ombuds may not see or hear about staff shortages or high turnover on the
particular time/date of their monitoring or phone visits. Another example is abuse and neglect
which research shows high rates for people with developmental disabilities and is
underreported. The majority of new complaints concerned Access to DDA service; Discharge or
Transfer; or Preference, Rights, Choice and Abuse.

Abuse, Neglect, Exploitation - 7 complaints concerning: Physical abuse (1), Sexual abuse (1),
Verbal/psychological abuse (2), Neglect (1), Personal safety planning (1), and other abuse,
neglect (1).

Access to Information - 1 complaint concerning: Access to complaint or grievance process (1).

Autonomy and Exercise of Rights - 23 complaints concerning: Dignity/Respect (1); Preference,
Choice and Rights (14); Guardianship (3); Privacy (1); Response to Complaints (2); and Personal
property (2).

Individual Care - 52 complaints concerning: Care plan individualized assessment (5); Physician
services (1); Mental health services (3); Access to DDA Services (40); and Healthcare (3).

Quality of Life - 6 complaints concerning: Activities (2), Active integrations into community (1),
Meaningful day (1), Transportation (1), and Safety and security (1).

Dietary - 1 complaint concerning: Food service (1).

Environment - 2 complaints concerning: Physical accessibility (1), and Infections control (1).

Administration - 30 complaints concerning: Administrator unresponsive (1), Inappropriate
administration (1), and Discharge/transfer planning (28).

Staffing - 1 complaints concerning: Shortage of staff (1).

Housing - 4 complaints concerning: Access/Lack of housing (3), and
Accommodations/modifications (1).

Civil/Legal - 1 complaint concerning: Family law (1).

Criminal Legal - 1 complaints concerning: Criminal justice issues (1).

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Complaint Resolution - Examples of assistance provided by DD Ombuds.

1. Summary of complaint - The DD Ombuds received a complaint from a family member about
a person with developmental disabilities who was at a state institution and wanted to move
into the community. The individual moved to Washington from another state where they
were receiving services. In Washington they were not able to receive proper in home
services resulting in a hospitalization. From the community hospital they were transported
to the state institution and placed on the DDA Core Waiver.

Outcome - The DD Ombuds assisted in advocacy for the individual. First on the person’s
treatment and services in the institution, and then on a transition plan to the community.
The individual stayed at the institution for over a year while waiting for community
placement. The DD Ombuds helped the guardian understand the transition process and
how to find information about community providers. The individual discharged to a
community residential setting where they are currently living.

2. Summary of complaint - The DD Ombuds received a complaint about a person with
developmental disabilities who was in a community hospital ready to discharge home and
receive support from their supported living provider. However, the provider did not think
they could support the person anymore with the change in the person’s support needs. The
individual went back and forth between a nursing home and hospitals for almost a year
while waiting for community placement. Staff who worked with the individual attributed
the nursing setting to have negative effects on their mental and physical health which they
believed resulted in increased hospitalizations.

Outcome - The DD Ombuds met with the individual about what supports they needed to
help them live in the community, and where they wanted to live. The person wanted to live
in their current community in order to keep their guardian whom they liked and trusted.
The DD Ombuds advocated for the person to live where they felt safe and happy, although
referral packets were sent statewide because a provider in their region could not be found.
Through the Pre-Admission Screening and Resident Review (PASRR) Program and Roads to
Community Living processes the person was able to receive a higher provider rate that
helped them move into an Adult Family Home near where they were living before the
hospitalization. The person is happy to be living in the community of their choice!

3. Summary of complaint - A teenaged client of DDA was receiving residential services. The
parents received two weeks' notice that services were terminating. The parents did not feel
as though that would give them enough time to get therapeutic and safety equipment in
place or secure in-home services. The parents contacted the DD Ombuds to help with a
discharge plan.

Outcome - The DD Ombuds arranged a meeting with the family, DDA, the client's remote
educator, and doctors and staff from the residential program. The team made a list of
everything the client and family would need for a safe discharge. DDA approved and

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ordered equipment. The family was connected to Wraparound Intensive Services (WISe).
The family had everything in place for the client's discharge home.

4. Summary of complaint - During a monitoring phone call visit, a client of DDA reported pain
in his leg and foot. He had not spoken with a doctor yet and did not have any upcoming
doctor's appointments. The person’s staff were unaware of the problem as well.

Outcome - The client and DD Ombuds spoke to staff together about scheduling a doctor's
appointment. The DD Ombuds followed up the next day to see if the appointment had been
scheduled, and it had. The DD Ombuds reached out to the client after the doctor's
appointment for an update. The client's illness was diagnosed and the client received
treatment for their pain.

Summary of Complaint Data - Analysis and Identification of Systemic Issues
The DD Ombuds resolves individual complaints and looks for patterns that may indicate a
systemic issue. Categories with the highest number of complaints include:

• Individual care issues which include access to DDA services, care plan assessments, and
access to mental health service. The majority of the individual care complaints were about
access to DDA services. The DD Ombuds worked at the regional level of DDA to address
case manager services. The DD Ombuds has identified access to behavioral supports,
access to mental health care, need for increased waiver funding for 14,000 clients waiting
for service, and the simplification of the eligibility process as systemic issues to be
addressed.

• Administration issues, primarily discharge/transfer. The DD Ombuds continues to assist
people who were in a hospital and unable to discharge into community services this fiscal
year. The DD Ombuds identified this as a significant systemic issue in 2019, published a
report and made specific recommendations to address this issue. DDA began to collect
some limited data about people who went to the hospital from supported living services
and were then unable to go back home with those services. As a result of the pandemic
DDA opened a cottage on the grounds of Rainier to transfer clients who were in hospitals,
unable to discharge.

• Autonomy and exercise of rights which include Dignity and Respect, Preference, Choice
and Rights, and Personal Property and Funds. The DD Ombuds helped individuals and
their families to problem solve with their service providers and their case managers to
address these issues. The DD Ombuds identified Preference, Rights, Choice as issues to
address systemically.

• Abuse, neglect and exploitation which includes physical abuse, sexual abuse,
verbal/psychological abuse, physical abuse between housemates, and personal safety
planning. The DD Ombuds worked on complaints regarding physical assault by one
roommate against another in residential settings. Lack of, and inadequate response by
providers and DDA are of great concern. Assaults are often dismissed as minor and victims
are not protected from future attacks. The DD Ombuds has identified this as a systemic
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issue for continued attention. The DD Ombuds worked on 1 complaint concerning sexual
assault of people with developmental disabilities. The DD Ombuds is concerned we are
not learning of abuse allegations since the pandemic. Without in-person meetings there is
less opportunity to receive complaints concerning abuse.

• Quality of life which includes activities, integration into the community, meaningful day
and transportation. Quality of life issues were also of concern as many people are isolated
and want more activities and social engagement. The DD Ombuds helped individuals and
their families to problem solve with their service providers and their case managers to
increase access to activities and day programs. This issue became more prominent when
people had to isolate because of the pandemic.

• Staffing, which are all complaints about shortage of staff. Staff turnover in certified
residential settings remains a concern.

The DD Ombuds made 199 visits (in person or by phone) to the following types of facilities,
residences and programs:
Certified Residential Services Settings - total visits - 141
Group Training Home - 0
Supported Living - 78
Supported Living Client Protection Program (CPP) - 33
State Supported Living - State Operated Living Alternatives (SOLA) - 29
State Supported Living - State Operated Living Alternatives (SOLA) Community Protection - 1

Licensed Residential Settings - total visits - 19
DD Group Homes Adult Family Homes (AFH) - 0
DD Group Homes Assisted Living Facilities (ALF) - 3
Adult Family Homes - 14
Assisted Living Facilities - 0
Nursing Homes - 2
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State Residential Habilitation Centers - total visits to cottages or programs - 36
Fircrest Intermediate Care Facility (ICF) - 4
Fircrest Nursing Facility (NF) - 2
Lakeland ICF - 10
Lakeland NF - 6
Rainier - 11
Yakima NF - 3

Licensed Children’s Residential Facilities - total visits - 1
Voluntary Placement Services - 1

Other Private Residence - 1
Own home – 1

Hospitals - total visits - 1
Eastern State Psychiatric Hospital - 0
Western State Psychiatric Hospital - 0
General Hospitals - 1

Total monitoring visits – 199

Systemic Change Outcomes
The DD Ombuds identified several systemic issues though monitoring visits and complaints, and
recommended system improvements. As a result the following policy or procedures were
changed.

1. Supported Living Clients Rights during Provider Provisional Certification or other
Enforcement actions.

Problem: In October 2018, a contracted provider of residential supports was decertified and
could no longer provide services for 214 DDA clients. The provider had received two
consecutive 90 day provisional certifications before decertification. The clients had not
received any notification even though this provider had received numerous health and
safety citations. No notice was given and clients were not informed of their rights or their
options for a new provider. In addition, DDA agreed to a plan for clients to be transferred to
another agency run by the same parent company of the agency that had been decertified.
Since then, other providers have received provisional certifications or other enforcement
actions.

Outcome: As a result of the DD Ombuds advocacy, DDA sends information about the
provisional certifications or other enforcement actions to clients and their legal
representatives. The DD Ombuds recommended this notice be required by statute. The
legislature passed HB 1651 in 2020 which requires this notice.

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2. Supported Living Referral Packet - Privacy Concerns
Problem: The DD Ombuds worked with several people who were concerned about the
supported living referral process. Specifically, both clients and parents were concerned the
referral process sent a significant amount of private information to prospective providers.
The DD Ombuds raised the concerns heard from clients to DDA. Clients did not want all
their private medical and service records to go out to providers that will never provide
supports to them. The DD Ombuds asked if there was another way for providers to get
enough information about the person to know if they could possibly serve the person and
then, if the provider was interested in serving the person, they could request additional
information.

Outcome: As a result of the DD Ombuds advocacy DDA created a new system to send a
cover sheet and then only send additional information if the provider was considering
serving the person. This new practice increases privacy protections. The DD Ombuds
monitored this practice in SFY 2020. The clients the DD Ombuds were in contact with were
pleased with this change.

3. Client rights
Problem: There was no one section of Washington law that spelled out the rights of those
who utilize DDA services. Further, people who use DDA services may have different rights
depending on where they live and receive services. This was confusing, difficult to navigate,
and created barriers to problem solving.

Outcome: The DD Ombuds worked to help create a statute spelling out the rights of people
who use DDA services so everyone can easily find them. DDA client rights are now in
statute. HB 1651 passed the legislature in the 2020 session. The bill gathered rights which
were scattered throughout the Revised Code of Washington (RCW) and Washington
Administrative Code (WAC) into one place in the RCWs. It established certain rights for
clients of the Department of Social and Health Services Developmental Disability
Administration. It specifies the right to participate in service planning, access service and
healthcare information, file grievances, privacy, confidentiality, access to advocates, and
rights upon termination of services.

4. Emerging Leaders – Access to the legislative process
Problem: Individuals with developmental disabilities did not have a place to discuss issues
and topics relating to legislative advocacy in depth. Individuals said they needed a place
they could ask questions and take time to fully understand proposed legislation. Individuals
new to the legislative process did not have a place to learn about legislative advocacy from
their peers and strategize for more effective advocacy at the capitol.
Outcome: Individuals receive the tools and information they need to communicate their
position successfully at the legislature, both in meetings and when testifying at hearings.

5. Preservation of Rights - Guardianship Documentation
Problem: The DD Ombuds identified a systemic issue where DDA was not routinely
gathering guardianship orders, only the guardianship letters. The guardianship order spells
out the scope of guardians’ authority. Without the guardianship order DDA would not be

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able to determine which decisions the guardian has authority to make on behalf of the
person they provide guardianship support.

Outcome: The DD Ombuds worked on several complaints where DDA has acknowledged
they need to collect the guardianship orders to determine the scope of the guardians’
authority. The DD Ombuds will continue to work on this issue to assure that people under
guardianship have their rights upheld and guardians are not making decisions that are the
person’s to make.

6. Community Protection – “Nothing About Us without Us”
Problem: The DD Ombuds worked on several complaints where the person receiving
supports through the community protection program was excluded from their treatment
team meetings. The DD Ombuds identified this as a systemic issue. People receiving services
are guaranteed the right to participate in their treatment team meeting.

Outcome: DDA acknowledge that some treatment team meetings were happening without
the DDA client in attendance and that should not be happening. The DD Ombuds continues
to monitor this practice to ensure people are able to attend and participate in their
treatment team meetings.

7. Legislative recommendations and outcomes -
a. House Bill 1651/SB 5843 concerns the rights of clients of the Developmental Disabilities
Administration of the Department of Social and Health Services. The DD Ombuds provided
suggested bill language, worked with stakeholders and gave testimony. The bill passed this
last session. To read the session law visit
https://app.leg.wa.gov/billsummary?BillNumber=1651&Year=2019&Initiative=false
2SHB 1651 spells out the rights of people who use Developmental Disability Administration
services in statute, gathers rights into one place in the RCWs, establishes certain rights for
clients, and specifies the right to: participate in service planning, access service and
healthcare information, file complaints and grievances, privacy and confidentiality, access
to advocates, and rights when services end. The DD Ombuds will be working with DDA and
advocates across the state to inform and educate people about their rights and how to
advocate for their rights!
b. SB 6205 is an act relating to preventing harassment, abuse, and discrimination experienced
by long-term care workers. The DD Ombuds raised concerns about the tone of the bill, the
lack of definitions, potential client abandonment, client privacy, and reporting
requirements. The DD Ombuds recommended that DSHS convene the work group rather
than L&I, and it should include advocates and self-advocates receiving DDA services. The DD
Ombuds worked with stakeholders to improve this bill which did pass. The session law
requires home care agencies and the consumer directed employers to establish certain
protocols related to employee discrimination and abuse and requires the Department of
Social and Health Services to convene a stakeholder work group to recommend best
practices for training employers, workers, and service recipients to keep home care settings
free from discrimination and abusive conduct.
c. HB2390 Respectful language. The DD Ombuds supported this bill to revise language in a
several statutes to reflect respectful language. This bill passed.
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d. 2SHB 2737 The DD Ombuds supported a bill, which passed, to add an organization
representing those with developmental disabilities to the children’s mental health
workgroup.
e. SB 6040-Concerning the budgeting process for certain state waiver services for individuals
with developmental disabilities. The caseload forecast council shall present the number of
individuals who are assessed as eligible for and have requested a service through the
individual and family services waiver and the basic plus waiver administered by the
developmental disabilities administration as a courtesy. The DD Ombuds testified in support
of caseload forecasting for certain state waivers in order to understand and fund DDA
waivers.
f. SB 6287-Concerning guardianships and conservatorships. The legislation would clarify the
uniform guardianship act which would include creating supported decision making for
people with intellectual and developmental disabilities. The DD Ombuds testified in support
of supported decision making as an alternative to guardianship that some people would
choose.

8. The DD Ombuds comments on Washington Administrative Code (WACs) and Waiver
Amendments - The DD Ombuds provided comments on WACs related to DDA services.
a. WACs - Intermediate care facilities for individuals with intellectual disabilities ICF/IDD
appeal rights: The DD Ombuds gave WAC comments concerning ICF/IDD appeal rights.
Comments identified areas for the need for increased clarity, the need for definitions and
timelines.
b. WACs - Psychotropic medication: the DD Ombuds gave comments on WACs concerning
psychotropic medication. Concerns expressed about the WAC not being person-centered,
that references to documenting behaviors were removed, that the provider is not required
to report change in a person’s behavior to the prescribing health care provider and concern
a person on psychotropic medication will have less access to positive behavior supports.
These WACs are still under consideration.
c. WACs - Overnight planned respite: The DD Ombuds gave comments on the overnight
planned respite WACs. Concerns included clarity, timelines, adherence to person centered
principles, and methods for monitoring quality of services provided.
d. WACS - Client Rights: The DD Ombuds worked with self-advocates and the legislature to
pass a Client Rights statute. DDA began pre-WAC stakeholder work at the end of SFY 2020.
The DD Ombuds comments recommended the WACs be written in planning language and
that no existing right be diminished.
e. Waiver Amendments – Individual and Family Services Waiver - The DD Ombuds gave
comments to add clarity in the definition of assistive technology.
f. Waiver Amendments – Home and Community Based Services (HCBS) Waivers – In March
2020 the DD Ombuds submitted comments regarding the HCBS waiver amendments.
Comments concerned transparency and accessibility of the stakeholder process; Access to
institutional level of care; Quality assurance and support for case resource managers;
Communication access for individuals with limited English proficiency; Access to state plan
services, especially mental health services; Lack of coordination to obtain medical necessary
services for individuals under age 21; Informed consent for use of restraints; and Cost limits
and caps on CIIBs waiver.

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Reports on Systemic Issues

Stuck in the Hospital - The DD Ombuds published the “Stuck in the Hospital” report in
December 2018. The report responded to the high volume of complaints the DD Ombuds
received about adults with developmental disabilities stuck in a hospital without any medical
need. Most of these individuals were Developmental Disabilities Administration (DDA) clients
who had been receiving residential services prior to hospitalization. Some individuals went to
the hospital for a medical condition, but when they were ready for discharge, they had no place
to go because their residential services provider had terminated their services. Other
individuals were dropped off at the hospital by a provider who could no longer manage their
care. These individuals with developmental disabilities spent weeks or months in a hospital
because DDA could not locate available residential placement with staff to provide care. As a
result, these individuals had to live in hospitals while waiting for residential placement. The
report makes recommendations to the State and the Legislature to address this tragic issue.
DDA has taken some steps to address this issue and the DD Ombuds received fewer complaints
from people stuck in the hospital in SFY2020. However, there still are people stuck in hospitals
unable to discharge.

Children and Youth with Developmental Disabilities in Foster Care – The DD Ombuds
published “Improving Services for Youth with Intellectual/Developmental Disabilities in Foster
Care” in September 2019. During the 2019 legislative session, the Washington State House of
Representatives’ Human Services and Early Learning Committee held a work session on youth
with developmental disabilities served by the child welfare system. During this work session, a
group of advocates articulated serious concerns about how youth with developmental
disabilities are being served by the Title IV-E foster care system. The advocates brought
concerns about how the lack of DDA-paid services might disadvantage youth with
developmental disabilities while they are in Title IV-E foster care placements and while they are
transitioning from a foster care setting to an adult residential setting. The advocates brought
these concerns to the State Legislature and the public to raise awareness and to ask for a
legislative response. The action by the advocacy community prompted the DD Ombuds to look
more closely at how children and youth with developmental disabilities are served in the Title
IV-E foster care system. The report makes recommendations for the Developmental Disabilities
Administration and the Department of Children, Youth and Families to work together to
improve services for children and youth with developmental disabilities in foster care.
Advocates continue to work on this very important issue.

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• Investigate, upon its own initiative or upon receipt of a complaint, issues related to a
person with developmental disabilities;
• Monitor procedures of the department to carry out its responsibilities in the delivery of
services to people with developmental disabilities;
• Review the facilities and procedures of state institutions state-licensed facilities and
residences which serve persons with developmental disabilities;
• Recommend changes, at least annually, to procedures for addressing the needs of
people with developmental disabilities to service providers, the department and
legislators.

Key areas of focus for expansion
• Reach people with developmental disabilities in rural areas and isolated settings.
• Reach people with developmental disabilities from diverse communities.
• Increase visits to people with developmental disabilities living in certified and licensed
residences.
• Increase number of complaints resolved/closed from people living in the community.
• Increase capacity to respond to incidents which affect groups of people with
developmental disabilities, such as a facility closure or provider decertification.
• Increase capacity to provide self-advocacy trainings and support.
• Increase capacity to work with policy makers on improvements to the service system.

The DD Ombuds modeled its program after the LTC Ombudsman Program with a State Ombuds
and Regional offices but does not yet have the resources to implement a volunteer program.
The DD Ombuds Program also has a self-advocacy educator to inform people with
developmental disabilities about their rights and how to address their concerns about their
services. The expansion plan details the model of regional offices, paid DD Ombuds and well-
trained DD Ombuds volunteers, an additional self-advocacy educator and a volunteer
coordinator.
The plan proposes a graduated increase in paid staff and use of volunteers over the next three
biennium. Phase one would be to stabilize the certainty of the funding for the program by
moving the DD Ombuds budget into the maintenance budget. Then in SFY 2022-2023 a
volunteer coordinator, self-advocacy educator and three DD Ombuds are added. Staffing is
increase by 3 DD Ombuds and an Office Assistant the next two biennium.

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Detailed Recommendations to the Legislature
Recommendations to the Legislature are based on analysis of complaints, monitoring,
Developmental Disabilities Ombuds (DD Ombuds) systemic issue identification and reports.

Recommendation 1- Clarify Office of Developmental Disabilities Ombuds Statute
Problem: DDA will only provide the DD Ombuds with contact information for people residing in
state-licensed facilities. The DD Ombuds does not have contact information for people receiving
residential services in certified settings, or receiving in-home services, or people who are
eligible for DDA services but not able to access them. This is not what the legislature intended
when they created the DD Ombuds to help prevent abuse and neglect. The DD Ombuds is
proposing a statute change to fix this problem and wants to ensure the support of the DD
advocacy community.
Currently, the person with developmental disabilities or their legal guardian may not learn
about the DD Ombuds unless their DDA Case Resource Manager or their state contracted
service provider tells them about DD Ombuds services.
If the DD Ombuds does not have the ability to reach out to people with developmental
disabilities receiving state services, people might never learn about the DD Ombuds or how to
contact the DD Ombuds if they have a complaint.
Proposal: A statute change is necessary to clarify the legislature intends the DD Ombuds to
have access to names and addresses of DDA clients in order to carry out its duties.

Recommendation 2 - Invest in quality community supports and services for children and
adults with developmental disabilities to reduce use of crisis services.

Problem: The long-term care system in Washington State is ranked as one of the best in the
country. Not so for individuals with developmental disabilities: Washington State ranks 37th in
the country for fiscal effort for services for individuals with developmental disabilities according
to the 2017 State of the State Report. Staff turnover is close to 50% in residential supported
living services, and likely higher since the pandemic. The highest number of complaints the DD
Ombuds handles concerned access to DDA services, and discharge/transfer. The DD Ombuds
sees a pattern of both children and adults with behavioral supports needs who are unable to
access needed services to stay in their own home or at home with a parent. Budget cuts to the
service system have been proposed as a result of the pandemic.
Proposals:
a. Preserve funding for services to children and adults with developmental disabilities.
b. Mandate caseload forecasting for DDA community supports and services.
c. Increase direct service workers wages in supported living to reduce turnover and
increase retention of well-trained staff.
d. Address the needs of the 14,000+ clients DDA has identified who asked for services but
are waiting (no paid services caseload) by increasing availability of waiver services.
Identify children and youth on the no paid services caseload, under the age of 21 and on
Medicaid and determine if there are unmet needs and whether those can be met under
the state Medicaid plan through EPSDT.

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Recommendation 3 - Prevent inappropriate hospitalization of children and adults with
developmental disabilities.

Solution: Make changes to the service system to ensure individuals with developmental
disabilities have access to services that prevent inappropriate hospitalization: 1. DDA provide
residential services to all eligible clients so people can discharge from hospitals as soon as they
are declared ready by medical personnel. 2. DDA provide enhanced crisis and behavior supports
in the community to address changing needs and prevent hospitalizations.

Proposals:
a. Require DDA to expand the data collected about all people with developmental disabilities
who are taken to the hospital to find out why people are stuck there. This includes people
coming out of residential service settings and private homes.
b. Expand the number and types of specialized providers. DDA should analyze the number and
type of specialized providers needed to meet the current demands for service in each
Region. Using this data, DDA employ or contract directly with specialists who can provide
the following services throughout the state: Psychological assessments; Consultation on
behavior supports for family caregivers, staff, and medical providers; Behavior supports for
people with developmental disabilities living in hospitals; Therapeutic mental and
behavioral health services; and Medication management
c. Direct DDA to identify and remove barriers to utilization of behavioral support, such as in-
home consultation, for children and adults who reside with parents.
d. Fund increased diversion bed, emergency respite or other bed capacity so individuals with
developmental disabilities have an appropriate placement available if they experience a
crisis and need residential services.

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Recommendation 4 - Improve services for youth with intellectual/developmental disabilities
in foster care

Problem: There are children and youth with developmental disabilities in the Title IV-E foster
care system who could be served better. There are concerns about how the lack of DDA-paid
services might disadvantage youth with developmental disabilities while they are in Title IV-E
foster care placements and while they are transitioning from a foster care setting to an adult
residential setting. The DD Ombuds gathered information about how other states serve
children with developmental disabilities in foster care in its report “Improving Services for
Youth with Intellectual/Developmental Disabilities in Foster Care.” The information from other
states can be a resource for identifying improvements in Washington’s system for supporting
and coordinating services for youth with developmental disabilities in Title IV-E foster care; for
creating a smooth and productive transition between Title IV-E foster care and DDA services;
and for supporting foster care families who serve children and youth with developmental
disabilities.

Solution: Create policy and legislative solutions to any gaps in services experienced by children
with developmental disabilities served by Title IV-E foster care in Washington State.

Proposal: The legislature can direct the DDA and DCYF to take the following actions and report
back to the legislature with a plan to improve services for children and youth with
developmental disabilities.
a. Medicaid waivers - Investigate if and how DDA waiver services may improve access to
specialized services for youth with developmental disabilities in Title IV-E foster care and/or
consistency of services as children and youth move between service settings.
b. Service Coordination between State Agencies - Investigate options for better service
coordination between DDA and DCYF at both the individual and systemic levels; Create
opportunities for cross training between DCYF and DDA case managers.
c. Screening and Eligibility - Research and develop protocols for automatic screening for
developmental disabilities when a child or youth enters the Title IV-E foster care system;
Create a system where identification of developmental disability by DCYF is referred to DDA
for application and eligibility determination.
d. Transition out of Foster Care Services -
i. Solicit policy recommendations from the current workgroup comprised of developmental
disabilities and foster care advocates looking at the issues posed by transition from foster
care to adult services;
ii. Investigate how many months before transition the planning process needs to begin;
iii. Ensure all DDA eligible youth are screened for developmental disability and DDA eligibility
upon entering the foster care system;
iv. Produce caseload forecast of the number of children and youth who will transition out of
Title IV-E foster care to DDA services based on data from DDA eligibility assessments;
v. Investigate if and how DDA waiver services improves access to specialized services for
youth with developmental disabilities in Title IV-E foster care and/or consistency of
services as children and youth move between service settings.
e. New License to Extend Age for Foster Care Homes - Research possible licensure options for
continued placement of youth with developmental disabilities in foster care homes after the

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age of 21; Recruit and retain foster care families to provide continued services for youth with
developmental disabilities past age 21.
f. Developmental Disability Certification for Foster Care Homes - DCYF and DDA develop
foster care family training/certification for serving children and youth with developmental
disabilities; DCYF recruit, train and retain foster care families to care for children and youth
with developmental disabilities.

Recommendation 5 - Identify and close gaps in mental health services for people with
developmental disabilities
Problem: The integration of Medicaid health care and behavioral health care has created gaps
in mental health services for individuals with developmental disabilities. This major overhaul of
the health care system did not adequately prepare to address the multifaceted needs of people
with developmental disabilities. Both children and adults have been turned away from mental
health services because of their developmental disability diagnosis. Adults with developmental
disabilities have experienced barriers to access medication management because of provider
rules about participation in therapy. DDA clients in crisis often bounce in and out of crisis
mental health services, jails and hospital emergency departments. Transitions into DDA services
can take months, are disjointed, or do not happen. DDA and the Health Care Authority (HCA)
have not identified ways to systematically detect the gaps in mental health services for children
and adults with developmental disabilities.

Solution: Create a mental health service system inclusive of people with developmental
disabilities. Children and adults with developmental disabilities and co-occurring mental illness
are able to access mental health services in all regions of the state and at all levels of care.

Proposal: Support HB 1394 Sec. 10 workgroup generated recommendations regarding
proposals to identify and examine current gaps in mental health services for children and adults
with developmental disabilities. Examine recommendations from the Children & Youth
Behavioral Health Work Group for improvements to services for individuals with developmental
disabilities.

Recommendation 6 - Ensure the State Auditor’s Office continues performance audits of long-
term care training partnership.
Problem: The Washington State Auditor’s Office proposed elimination of the mandated
performance audits of the long-term care training program on a two year cycle.
Solution: Performance audits are the way the training partnership work is examined on a
regular basis.
Proposal: Maintain performance audits of the work of the training partnership and long-term
care worker program on a regular basis.

Questions or comments about this report?
Contact: Betty Schwieterman, State Developmental Disabilities Ombuds
Office of Developmental Disabilities Ombuds
betty@ddombuds.org 833.727.8900 ext. 209
To learn more about the DD Ombuds visit: www.ddombuds.org

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Original: app.leg.wa.gov

Annual Report on Activities SFY 2020 — Office of Developmental Disabilities Ombuds

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