Advocacy Update: A Dialogue with the Bazelon Center by Alison

Major Areas for Disability Advocacy
Alison Barkoff
Director of Advocacy
Bazelon Center for Mental Health Law
[email protected]
Areas for Discussion Today
• Employment of people with disabilities
• Compliance with CMS’ Home and Community-Based Services
Settings Requirements
• Compliance with Department of Labor’s Fair Labor Standards
Act (FLSA) regulations for Home Care
Employment of Persons with Disabilities
What Do We Want our Disability Service
Systems to Help People Do?
• Help people with disabilities live like people without disabilities
• Help people with disabilities have true integration,
independence, choice and self-determination in all aspects of
life – where people live, how they spend their days, and real
community membership
• Ensure quality services that meet people’s needs and help
them achieve their own goals
Employment is Critical
To Meeting our System Goals
• Supporting people with disabilities to work in integrated
employment in the community is critical to:
– Helping people with disabilities access the greater community;
– Facilitating relationships with people without disabilities;
– Building new skills and self-esteem;
– Recovery for people with mental illnesses;
– Helping bring people with disabilities out of poverty; and
– Providing meaningful ways for people with disabilities to spend their
Current State of Employment
of People with IDD
• Major findings from ICI’s “National Report on Employment
Services and Outcomes 2012”
– Only 18% of people receiving IDD day services are in integrated
• This is DOWN from a peak of 25% in 2001
• For those working, it is often for very limited number of hours
– Investment in facility-based programs and community-based nonwork is INCREASING
Current State of Employment of
People with Mental Illness
• Only 10 to 15% of people with serious mental illness are
• According to the most recent SAMHSA data (2012), only 1.7%
of people receiving mental health services are receiving
evidence-based supported employment services.
• In contrast, states are spending significant portions of their MH
funding and have far more people receiving day treatment
Policies Leading to Increased Focus on
Employment of Persons with Disabilities
• Enforcement of the ADA and the Olmstead decision
• Medicaid policies
– New “settings rule” for HCBS
– Guidance on employment-related services
• Other laws and policies
– Workforce Innovation and Opportunities Act
– State “Employment First” initiatives
• Our systems can do better to support people with disabilities!
• Change is hard, but many states and even providers have
recognized that many service models are outdated, cause
lasting dependence, and do not support what people with
disabilities want.
• These policies may create a new environment in your state,
where real and meaningful change is possible.
Olmstead Application
to Segregated Day Services
• ADA and Olmstead applies to all types of services, both
residential and non-residential
– Segregated setting under the ADA include those “that provide for
daytime activities primarily with other people with disabilities”
• This includes sheltered workshops, day habilitation and day treatment
– Integrated settings under the ADA include those that provide people
with disabilities the “opportunity to live, work and receive services in
the greater community”
• This includes competitive employment in mainstream jobs in the community
Progression of Olmstead Litigation
• Supported employment services (to facilitate employment in
competitive wage jobs in integrated settings) part of
community services remedy for people leaving or diverted
from institutions (both IDD and mental health)
– Examples: settlement agreements in Georgia, Delaware, North
Carolina and Virginia
• Direct challenge to over-reliance on providing employment
services in segregated settings (i.e., sheltered workshops),
seeking supported employment services as a remedy
– Example: litigation against Oregon
Progression of Olmstead Litigation (cont’d)
• Direct challenge to over-reliance on segregated employment
and other day settings (ie, sheltered workshops and day
habilitation), remedy includes expansion of supported
employment services and “wraparound” integrated non-work
day services (e.g., mainstream recreational, social, educational,
cultural and athletic activities)
– Example: settlement agreement with Rhode Island
• Future Olmstead litigation will likely challenge over-reliance
other types of segregated day services, such as day treatment
HCBS Settings Rule and
Its Impact on Employment
• Rule is clear that the settings requirements apply to ALL
services provided under HCBS authorities, both residential and
• Expectation is that states will closely examine the day service
settings in their HCBS programs and will transition noncompliant settings
– This is a real opportunity for states to modernize their day service
systems to align with their system goals for people with disabilities
and with other efforts (like Employment First)
Characteristics of Home and Community
Based Settings
An outcome oriented definition that focuses on the nature and
quality of individuals’ experiences, including that the setting:
1. Is integrated in and supports access to the greater
2. Provides opportunities to seek employment and work in
competitive integrated settings, engage in community life,
and control personal resources
3. Is selected by the individual from among setting options,
including non-disability specific settings
HCB Setting Characteristics (cont’d)
4. Ensures the individual receives services in the community to
the same degree of access as individuals not receiving
Medicaid HCBS
5. Ensures an individual’s rights of privacy, dignity, respect, and
freedom from coercion and restraint
6. Optimizes individual initiative, autonomy, and independence
in making life choices
7. Facilitates individual choice regarding services and supports,
and who provides them
Presumptively Non-HCB Settings
• Settings that are presumed to be unallowable, unless a state
can prove that it does in fact meet the HCB characteristics and
does not have institutional qualities:
– Facilities providing inpatient institutional services
– Settings on the grounds of, or adjacent to, a public institution
– Settings that have the effect of isolating HCBS recipients from the broader
community, which may include settings that:
Are designed specifically for PWD or with specific disabilities
Are comprised primarily of PWD and staff providing services
Where PWD are provided multiple types of services onsite
Where PWD have limited interaction with the broader community
Use restrictive interventions
Day Service Settings that Will Need to Be
Closely Examined Under the Regulations
• Many day service settings may have trouble meeting the
affirmative requirements of the regulations or may have
characteristics of “settings that isolate” including:
– Pre-vocational services in sheltered workshops
– Employer services through crews and enclaves
– Day habilitation
– Day treatment
• States need not wait for additional CMS guidance to start
examining their day services; there are some settings that
clearly will not meet the reg under existing guidance
1915(c) Employment Guidance
• States should be re-examining their service definitions in light
of CMS’ September 2011 guidance on employment services
under 1915(c) waivers:
– Describes the importance of, and Medicaid’s support of, competitive
work in integrated settings for people with disabilities.
– Clarifies that the expected outcome of prevocational services is
competitive, integrated employment in the community at or above
minimum wage. Prevocational services are not a pre-requisite for
supported employment services, and they must be time limited.
– Allows for a separate career planning service.
Workforce Innovation and
Opportunities Act of 2014
• A goal of the law is to increase employment of people with
disabilities in integrated employment settings; attempts to
significantly limit the use of 14(c), particularly for youth:
– Defines and prioritizes integrated employment as work at or above
minimum wage, with wages and benefits comparable to people
without disabilities and fully integrated with co-workers without
– Requires anyone under 24 to explore and try integrated employment
before they can be placed in a sub-minimum wage setting; prohibits
schools from contracting with sub- minimum wage providers
• Attempt to align with expectation of integration in schools for students with
disabilities (least restrictive environment requirement)
WIOA (cont’d)
• Additional relevant provisions to increase access to integrated
employment for people with disabilities:
– Requirement for formal cross-agency cooperative agreement
between voc. rehab., state IDD agency, and Medicaid agency
– Requirement that at least 15% of voc. rehab. funds be used for preemployment transition services
– Definition of supported employment clarified to make clear that it is
integrated, competitive employment
– Post-employment support services extended from 18 to 24 months
– Requirement that at least half of supported employment state grant
funds used to youth (up to age 24) with most significant disabilities
State “Employment First” Initiatives
• Many states are developing and implementing “employment
first” initiatives to prioritize integrated, competitive
employment for people with disabilities
– As part of these initiatives, states are closely examining their existing
day service capacity, Medicaid definitions and coverage, and
– Many states are exploring “rebalancing strategies” (including using
Balancing Incentive Funds)
– But many states’ employment first policies are on for people with IDD
and do not include people with psychiatric disabilities
Advocacy Efforts Around Employment
• Developing Olmstead litigation regarding over-reliance on day
treatment, day habilitation, etc. and seeking expansion of supported
employment as relief
• Ensuring states’ affirmative Olmstead planning includes transition from
segregated day services to integrated employment
• Advocating for revising Medicaid service definitions and funding to
incentivize supported employment
• Pushing for state development of 1915(i) state plan services to cover
supported employment (particularly for funding for people with
psychiatric disabilities.
• Advocating for cross-disability Employment First policies
HCBS Settings Rule Advocacy
Major Points for HCBS Advocacy
• States should engage stakeholders (people with disabilities,
families, disability advocacy groups) early in the transition
planning process. Do not wait for engagement until the 30
day public comment period.
• States must develop a process to evaluate their settings based
on multiple sources of information. Paper review of
regulations and/or provider self-assessment is not sufficient.
– There should be some on-site reviews, particularly of settings that
raise concerns (like ones that might be “settings that isolate”).
– Should seek input from consumers and their families about settings.
– Use other tools in place in states (eg, National Core Indicators data). 24
Major Points for HCBS Advocacy (cont’d)
• Transition plans should describe the process for ensuring that
people are given a choice of settings (including non-disability
specific settings)
– There cannot be a choice of non-disability specific settings if there is
not capacity; there may need to be a plan for expansion of those
types of settings.
• Plans should include the process for monitoring compliance
with any “modifications” to provider-owned setting
• Plans should include a process for on-going monitoring of
Major Points for HCBS Advocacy (cont’d)
• If a state’s initial transition plan is a “plan to plan,” public
engagement and comment will need to occur when
substantive changes are made (including if a state has a
separate time frame for developing a substantive evaluation of
non-residential settings).
• States should see the HCBS regulations as an opportunity to
align their affirmative Olmstead efforts and to modernize
their disability service systems. Disability advocates can help
can help support these goals.
– States can help us engage advocates by ensuring we have accurate
information at
DOL’s New Home Care Rule
Basics of the Home Care Rule
• Final Home Care Rule issued on Oct. 1, 2013 and will become
effective on January 1, 2015.
• Previously most home care workers were excluded from the
Fair Labor Standards Act’s (FLSA) minimum wage and overtime
provisions under the “companionship exemption” or overtime
under the “live-in” emption
• Starting Jan. 1, 2015, most home care workers will be covered
by the FLSA’s requirements
Major Provisions of the New Home Care Rule
• Narrows the definition of “companionship services”
– No more than 20% of hours worked can be care, defined as
assistance with ADLs and IADLs
– No “medically-related services” can be performed (in any amount)
– In almost all cases, personal care services will not “companionship
• Prohibits “third party” employers from claiming the
companionship or live-in exemptions
– “Third party” employers include states, other public agencies, fiscal
intermediaries, or managed care organizations who are “joint
employers” in consumer-directed programs
DOL Additional Guidance
on Implementation Issues
• Shared Living Guidance (March 2014)
– Describes different shared living models – adult foster care, host
home, paid roommate, shared living, or life sharing models
– Gives examples of models that are set up as independent contractors,
so FLSA does not apply (this is most adult foster care programs)
– In other models, there is enough control by a third party entity (like
an agency) or a consumer that there is an employment relationship.
In these models, it describes the relevant rules for calculating “hours
worked” (including rules around sleep time) and pay (including
offsets for room and board
DOL Additional Guidance
on Implementation Issues (cont’d)
• Joint Employment in Consumer Directed Programs (June 2014)
– Describes the multi-factor “economic realities” test for determining if
a third party is a joint employer with the consumer; gives examples of
strong, medium and weak indicia of an e-ment relationship
– Contains eight detailed models of consumer-direction and describes
who is the employer(s) in each
– Describes the implications of joint employment, including that hours
across consumers must be combined and travel between consumers
counts as “hours worked” for the employer
The National Resource Center for Participant-Directed Services
developed a detailed toolkit about this guidance and implications 31
DOL Additional Guidance
on Implementation Issues (cont’d)
• Updated Fact Sheet on Paid Family Providers (June 2014)
– Final rule said that the scope of the employment versus familial
relationship had to be defined in a “reasonable plan of care”
– Guidance clarified that “reasonable” plan of care means that the
number of paid hours in a particular setting would have been the
same regardless if the provider was family or not
– Gives examples of reasonable plans of care, all of which recognize
that natural supports may differ in different settings
DOL’s Non-Enforcement Policy
• On October 7, 2014 DOL announced a time-limited nonenforcement policy
– From Jan 1 to June 30, 2015, DOL will not enforce the new home care
rule against any employer and instead focus on TA.
– From July 1 to Dec. 30, 2015, DOL will use its discretion in bringing
enforcement actions (will look if “good faith” compliance efforts)
– The non-enforcement policy did not change the effective date of the
rule; back wages accrue as of the effective date
– Non-enforcement does not impact private enforcement
• STATES are immune from suits for money damages, although not prospective
injunctive relief, unless there is a state waiver of immunity
• Private entities (like other public entities, FIs or MCOs) can be sued
Disability Advocacy
Around the Home Care Rule
• Advocates are very concerned about states coming into
compliance with the new rule in any way that could lead to
cuts in consumer hours, negatively impact the quality of
services, or lead to the dismantling of consumer-directed
– A coalition of disability and aging advocates put out “Action Steps for
Consumers and Advocates Regarding the New Home Care Rule: How
to Prevent Service Cuts and Protect Consumer-Directed Programs”
Steps States Must Be Taking
• Ensure adequate funding in FY ‘16 budgets
– Analyze which programs are affected by the rule and the budget impact of paying
overtime (including to people who work across consumer) and worker travel time
between consumers
– Additional funding will likely be necessary for a reasonable compliance policy, including
funding for direct state costs (when the state is a joint employer) or rate increases (when
a non-state third party is a joint employer)
• Use Medicaid to help pay for additional costs
– Medicaid can be used to pay for OT and travel time; CMS has issued guidance with a
variety of options
– Consumers SHOULD NOT be required to pay for worker OT and travel not attributable to
that consumer out of their individual service budget; otherwise they will lose services
they are entitled to receive
– Consumers CANNOT be required to pay for OT out of their pockets
Steps States Must Be Taking (cont’d)
• Develop reasonable compliance policies; Do Not Put in Place
Policies that Prohibit All Overtime and Travel
– These types of policies will hurt consumers (and workers) and could
lead to significant cuts in critical services for consumers.
– In many cases, the costs of implementing restrictive policy may be
more than reasonable compliance policies
– While these policies might technically comply with FLSA, they could
violate other laws (including the ADA) if they place people at serious
risk of institutionalization.
Steps States Must Be Taking (cont’d)
• To comply with Olmstead, states must at a minimum have an
“exceptions process”
– Exceptions process allows consumers who would be particularly
harmed by restrictive policies to be exempted from those policies or
for alternative services to be put in place for those consumers
– ADA and Olmstead apply to state policies, even when implemented
through a private entity; thus, a state must develop an exceptions
process even when CD program implemented through a non-state
third party
Steps States Must Be Taking (cont’d)
• States Must Be Taking These Steps Now, Even with a TimeLimited Non-Enforcement Policy, To Evidence “Good Faith”
– States must evaluate the impact of non-enforcement on their system;
impacts depends on the model
– Even if non-enforcement gives a system more time, FY ’16 budget will
cover the time period after non-enforcement period
– In exercising its “prosecutorial discretion” (including possibly seeking
back wages from the effective date), DOL will be looking at “good
faith efforts” to come into compliance
• Good faith efforts can include addressing compliance in FY ‘16 budgets,
working with CMS on Medicaid coverage, putting in place technology from
tracking OT and travel, and developing an exceptions policy
Home Care Rule Resources
• DOL website on the home care rule:
• CMS Guidance on the home care rule:
• National Resource Center for Participant Directed Services Home Care Rule
• Disability and Aging Advocacy Organizations’ “Action Steps for Consumers and
Advocates Regarding the Home Care Rule:”
0 (can link from
Questions or Comments?
Contact info:
Alison Barkoff
[email protected]
202-467-5730 x 309

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