July 20, 2016
SENT VIA FIRST CLASS AND ELECTRONIC MAIL
Acting Secretary Patricia Lashway
Washington State Department of Social and Health Services
OB 2, 4th Floor
1115 Washington Street SE
MS 45010
Olympia, WA 98504
LashwPK@dshs.wa.gov
Director Dorothy Frost Teeter
Washington State Health Care Authority
626 8th Avenue SE
P.O. Box 45502
Olympia, WA 98504-5502
Dorothy.teeter@hca.wa.gov

Dear Acting Secretary Lashway and Director Teeter,
Disability Rights Washington (DRW) has been conducting an investigation to determine whether
the Department of Social and Health Services (DSHS) is providing adequate Medicaid-funded
residential habilitative support services to individuals with developmental disabilities in the
most integrated and least restrictive settings appropriate to their needs.1 Based on our
investigation, we have found that DSHS’s Developmental Disabilities Administration (DDA) has
been unable to provide adequate community-based supported living services to individuals
with developmental disabilities and high behavioral or medical support needs, and has no
effectively working plan to do so. As a result, many individuals are being unnecessarily
institutionalized or are at risk of institutionalization in violation of their rights under the
Americans with Disabilities Act (ADA), as well as the Medicaid Act.
We are writing to request a meeting to discuss a potential pathway to collaboratively resolving
this systemic problem to ensure all eligible individuals who wish to live in the community have
the option to do so. In this letter, we are providing you with summaries of representative
examples we have found during our investigation, as well as a brief overview of our systemic
1

This investigation has been based on interviews, as well as an exhaustive set of DSHS records and
correspondence. We ask that you extend our appreciation to DSHS staff who assisted us in accessing hundreds of
records that DRW reviewed for this investigation.

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analysis. We hope that upon reviewing this information, DSHS and the Health Care Authority
(HCA) will be open to discussing effective short and long-term solutions.
Representative Investigation Examples
Individuals Unnecessarily Institutionalized
The following individuals were included on a list of fifty individuals residing at one of the state’s
Residential Habilitation Centers (RHC) and seeking discharge to a less restrictive and more
integrated setting in December 2015. All of these individuals were institutionalized due to a
lack of supports needed to address their behavioral health conditions and intellectual
disabilities. Like the other dozens of other RHC residents seeking to deinstitutionalize, they
need community based residential supports from trained and qualified supported living staff
and adequate day supports in order to successfully integrate into the community. Although all
of these representative individuals have been expressing a desire to discharge since last year,
all remain institutionalized and segregated due to the same systemic inadequacies that led to
their institutionalization.


C.F.

C.F. is a twenty-five year old man who has never wanted to live in an institution.
Unfortunately, he was institutionalized in October 2014 after his community-based
supported living provider terminated his services. Due to a series of incidents arising from
his unmet complex behavioral support needs, his provider was unable to retain sufficient
staff to provide him with services. After a physical altercation involving C.F. and the
provider’s staff, both of whom made cross-allegations of assault against the other, C.F.’s
provider gave DDA a notice of termination effective within hours.
Without the ability to live independently, C.F. had no option but to stay with his parents
while DDA searched for a new provider. DDA sent referral packets to private supported
living providers, and inquired about supporting him in DDA’s State Operated Living
Alternatives (SOLA) supported living program, but to no avail. With no available
replacement services, C.F. was admitted to an RHC as a short-term resident. He has
remained institutionalized because DDA has been unable to identify a supported living
provider with capacity and interest in serving him. In addition, his guardian has concerns
about discharging to another privately operated supported living provider who could
immediately terminate services if it determines it is unable to appropriately meet his
behavioral support needs arising from his dual diagnoses of schizophrenia and autism.


C.D.

C.D. is a twenty-five year old man who has been wanting to go back to “the real world”
since he was institutionalized in November of 2014. DDA had attempted to maintain C.D. in
the community, authorizing funding for his supported living provider to increase the
number of staff to support him, but C.D’s provider could not recruit and retain sufficient

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staff to adequately address C.D.’s escalating behavioral support challenges. After six
months of instability, arrests, and incarcerations, C.D.’s supported living provider gave DDA
notice that it could no longer support him. DDA attempted to divert C.D. from
institutionalization using crisis diversion services, and C.D. agreed to switch from the Core
Waiver to the Community Protection Program. A new supported living provider prepared to
begin services, but then terminated its plan after another arrest and an involuntary
treatment admission. With no other discharge alternatives, C.D. was admitted as a shortterm resident to a RHC under a Less Restrictive Order.
Soon after C.D. was institutionalized, DDA sent referral packets to private supported living
agencies statewide. Initially, a few supported living providers were interested, and one
provider started to prepare an apartment for him. When that provider decided not to
continue moving forward with the referral, a few other providers across the state expressed
interest. However, over the next several months, all of them determined they could not
support him. By late 2015, no other supported living providers had been identified, and for
over a year and a half, C.D. has remained segregated at the RHC.


J.P.

J.P. is a thirty-two year old woman who, for most of her adult life, has been
institutionalized. After many years of being involuntarily committed at Western State
Hospital, J.P was admitted to an RHC in 2009 because DDA could find no supported living
provider to support her transition from the hospital to a community based setting. Three
years later, J.P. discharged with supported living services, only to return to the RHC within a
few weeks after the supported living provider failed to follow the recommendations J.P.’s
RHC team had made for supporting her behavior.
Since she was admitted to the RHC, J.P. has continued requesting a discharge to the
community. In January 2015, a provider was identified for J.P., with the caveat that it could
take up to a year to find the necessary staff. It is now a year and a half later. J.P. has
otherwise met discharge criteria, has an apartment that she has been renting for months,
has a community dialectical behavior treatment provider, goes to a local community center,
and is moving forward with finding a community job. However, while the provider has hired
staff in the past seventeen months, J.P. still has been unable to transition to the community
due to high staff turnover. DDA has no alternative plan or timeline to ensure J.P. does not
continue to be institutionalized indefinitely.
Non-institutionalized Individuals Seeking HCBS Waiver services
During the course of its investigation, DRW further learned that in addition to the DDA list of
RHC residents awaiting supported living services, there were also a number of HCBS waiver
participants who had not yet been institutionalized, but were unable to access supported living
services. Like the RHC residents, these individuals need services that DDA has been unable to

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provide them. As a result, they are at risk of unnecessary institutionalization due to an
inadequate community-based provider network.


L.B.

L.B. is a fifty-one year old woman who has lived her entire life in the community. Earlier in
her life, L.B. had received brief respite services in an RHC, after which her mother and
guardian decided L.B. should never be institutionalized on a long-term basis. Nevertheless,
L.B. has been at risk of institutionalization since she lost her supported living services in
October of 2015. After her mother/guardian raised numerous complaints about her services
and lack of physical accessibility for her wheelchair in her home, her landlord refused to
renew her lease and her supported living provider gave over a month’s notice of
termination.
Prior to the termination date, DDA sent referral packets to providers in the county where
her mother/guardian resides, but each agency declined based on lack of staff. DDA
suggested admission to an RHC, and threatened to report L.B.’s guardian to APS when she
declined to institutionalize L.B. and requested an additional extension of supported living
services while L.B.’s fragile health stabilized. L.B. temporarily moved in with her aging
mother and stepfather, who have been supporting her with the help of personal care
services. Over the age of seventy, L.B.’s mother is concerned about her ability to continue
supporting L.B. to live with her, which requires that she provide L.B. with significant
personal care assistance when paid caregivers cancel, do not show up, or cannot cover a
shift. However, even after resending referral packets multiple times to various supported
living providers and sending referral packets to providers farther away from L.B.’s mother,
DDA has found no agency to accept her referral due to lack of staff. To avoid
institutionalization, L.B.’s guardian has agreed to consider an adult family home, which is
not a habilitative residential setting, but would still prefer L.B. be served through supported
living.
DRW also found examples where other individuals waited long periods for a community-based
provider, but were only given one choice. DRW has already reported concerns to DDA and
other entities about J.A., a nineteen year old Basic Plus waiver participant who had only one
discharge option from the hospital - an adult family home located over 300 miles away from his
mother. See May 6, 2016 Letter. As detailed in DRW’s June 14, 2016 letter to Secretary
Lashway, this individual died on June 9, 2016.
Supported Living Provider Interviews
DRW interviewed administrators of ten supported living providers offering services in all three
DDA Regions. While some of the specific issues discussed varied, all of the providers noted

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increasing challenges in recruiting and maintaining a qualified workforce. 2 In particular,
providers discussed the challenges in retaining highly skilled staff to implement more
complicated support interventions for clients with fragile physical or behavioral conditions. To
meet these higher level needs, providers stressed their needs for increased funding, better
coordination with other healthcare providers, more access to healthcare specialists, and
improved crisis intervention planning. In addition, many providers shared frustrations they felt
towards families and guardians, particularly of clients with more vulnerable conditions, which
highlights a need to facilitate more collaboration between supported living providers and
individuals’ natural supports.
Given these system limitations, providers expressed a hesitation if not inability to serve more
clients with more complex needs. All of the providers were aware of DSHS’s offer to consider
proposals for increased resources to facilitate RHC discharges, but most articulated concerns
that the augmented resources could be temporary and would not be sufficient to address the
overarching resource deficiencies they are already facing. All the providers had at least one
recent example of having to terminate an individual’s services knowing that the individual had
no alternative providers - a scenario none were eager to risk again. At the same time, providers
noted trends in increased state oversight and more stringent enforcement of provider
standards. While improving quality is a shared goal, for several providers, simply setting
greater expectations without increasing resources to support higher standards has been more
discouraging than effective.
Legal Obligations
The “Integration Mandate” of the Americans with Disabilities Act and § 504 of the
Rehabilitation Act prohibits unnecessary isolation and institutionalization as a form of disabilitybased discrimination. Olmstead v. L.C., 527 U.S. 581 (1990). The State’s failure to facilitate
transitions for these and other similarly situated individuals to appropriate community services
and supports constitutes a violation of this mandate even if it is not forcing or directly causing
these individuals to be isolated and institutionalized. Day v. D.C., 894 F. Supp.2d 1, 22 (D.D.C.
2012) (citing Joseph S., 561 F. Supp.2d at 293 and DOJ Statement).
A workforce and provider shortage also does not obviate the state’s responsibilities. On remand
from the Ninth Circuit, the district Court noted that that under the Arizona’s policy, “HCBS
beneficiaries assume the risk, by choosing to remain at home rather than being
institutionalized, that services that they are dependent upon will not be delivered.” Ball v.
Rodgers, No. CV 00-67TUCEHC, 2009 WL 1395423, at *5 (D. Ariz. Apr. 24, 2009). On remand,
the district court did not alter its original injunction calling for provision of services without
gaps, development of “adequate alternative or contingency plans for instances when a service

2

See also, Supported Living Program Reimbursement – Independent Review, at
http://arcwa.org/resources/WA_DDA_SL_Report-Final_11_11_13.pdf, p. 11 (2013) (citing high staff turnover
associated with low reimbursement rates).

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is unable to be provided,” as well as “a rate of pay” that “guarantees that each individual will
receive the services for which he or she qualifies.” Ball v. Biedess, No. CIV00-0067-TUC-EHC,
2004 WL 2566262, at *6-7 (D. Ariz. Aug. 13, 2004).
In addition, the Medicaid Act establishes obligations to ensure reasonable promptness and
choice of provider. Dunakin, 2015 WL 1619065, at *16 (citing 42 U.S.C. § 1396a(a)(8)); 42 U.S.C.
§ 1396n(c)(2)(C). While there are no specific timeframes in the plain language of the
“reasonable promptness” Medicaid provision, or regulations, there is precedent suggesting
services must be available to eligible recipients within ninety days. Doe v. Chiles, 136 F.3d 709
(11th Cir. 1998); See also Boyle v. Dreyfus, No. C01-5687 JKA (W.D. WA May, 20, 2010) (Dkt.
237) at ¶ 3 (requiring “reasonable efforts” to provide HCBS services within ninety days of when
the “need is identified and incorporated into [Individual Support Plan].”)
HCBS Medicaid waivers must also include the assurance that:
such individuals who are determined to be likely to require the level of care
provided in a hospital, nursing facility, or intermediate care facility for the
mentally retarded3 are informed of the feasible alternatives, if available under
the waiver, at the choice of such individuals, to the provision of inpatient
hospital services, nursing facility services, or services in an intermediate care
facility for the mentally retarded….
42 U.S.C. § 1396n(c)(2)(C). This provision confers upon eligible individuals “two explicitly
identified rights—(a) the right to be informed of alternatives to traditional long-term
institutional care, and (b) the right to choose among those alternatives.” Dunakin, 2015 WL
1619065, at *19 (citing Ball v. Rodgers, 492 F.3d 1094, 1107 (9th Cir.2007)). CMS regulations
further require that HCBS waiver settings be “selected by the individual from among setting
options.” 42 C.F.R. § 441.301(c)(4)(ii). The state must ensure HCBS Waiver participants have a
“person-centered service plan” that “[r]eflect[s] that the setting in which the individual resides
is chosen by the individual.” 42 C.F.R. § 441.301(c)(2)(i).
Settlement Discussions
The individual examples we have chosen to share with DDA demonstrate that the state is not
satisfying these legal obligations. At best, DDA has a provider network with limited capacity to
meet some DDA clients’ residential and day support needs. However, the standard protocol of
sending referral packets to supported living providers has been ineffective for many individuals

3

The term “mentally retarded” is used in this context, only because it is a direct quote of the text of this
regulation. It should be noted, however, that in the years since this regulation was promulgated, this term has
been recognized as disrespectful and has been replaced by people with disabilities, clinicians, advocates, and both
state and federal legislatures with the term “intellectual disability.” See e.g., Washington State Respectful
Language Act, RCW 44.04.280; or the usage of disability in the subsequent federal legislation title “Americans with
Disabilities Act.”

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with higher behavioral and medical needs. Under its current system, these individuals are
denied community based supports because providers are unable to find sufficient staff to
provide higher level habilitation services. Those who can access community providers often
have no choice among providers and are at risk of losing irreplaceable services that providers
may terminate at will. Additional efforts to use the federal Money Follows the Person (MFP)
grant to implement the state’s Roads to Community Living program has also been insufficient to
address the systemic causes for prolonged and undesired institutionalization. In short, the
state’s plan to deinstitutionalize individuals seeking more integrated services is not effectively
working for people whose needs demand a higher skilled residential workforce or cross-system
coordination.
To resolve these legal violations, we would like to invite DSHS to engage in a structured
negotiation to reach an agreement for modifying DDA’s supported living program to actually
ensure these services are reliably available to all individuals who need supported living to avoid
segregation and institutionalization.
We would ask that you provide us with a response by August 19, 2016, indicating whether DSHS
is willing to negotiate with DRW to reach an agreed plan of reform. If so, we will propose a call
to discuss scheduling and agendas for the initial meetings, which will provide us an opportunity
to identify a framework of issues to resolve. We look forward to hearing from you and hope
that we can work collaboratively on this important endeavor.
Sincerely,

David Carlson
Director of Legal Advocacy