How the feds 2014 rule restricting group settings for people with developmental disabilities is a barrier to appropriate care

“Regulations that are at odds with the purpose and letter of the law have caused unnecessary suffering to individuals with ASD and their families for too long already. Why wait longer?” - Ed Dolan 

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Ed Dolan from the Niskanen Center posted an excellent article last October, summarizing and expounding on the controversy over the 2014 federal Home and Community-Based Settings rule that attempts to restrict group settings for people with autism and other disabilities: “How Regulation Is Preventing Adults with Autism from Getting the Care They Need”, 10/16/17.

According to the HCBS rule, any group setting where services are provided to people with disabilities that resembles an “institution” is subject to “heightened scrutiny” by the federal regulatory agency CMS (the Centers for Medicare and Medicaid Services), making it less likely that the setting will be approved as a Home and Community-Based setting that may receive Medicaid funding. This is despite the fact that “institutions”, as they are strictly defined by Medicaid law, must be available to individuals eligible for their services and that that eligibility also allows the same individuals to waive their right to institutional care in favor of community settings with comparable services. Funding is then provided through “Medicaid Waivers” that allow states the flexibility to provide services in a variety of settings based on the needs and preferences of the individual. 

But the settings rule is being interpreted as a mandate for full community integration for all people with disabilities regardless of the appropriateness of care or the preferences of people with disabilities and their families. It has been used as an excuse to close programs and residential settings that serve people with more complex and severe disabilities and to thwart innovative programs that seek to create better options for people with a variety of disabilities.

Although Dolan concentrates on the autism spectrum, this article applies, as well, to people with other disabilities that present a range of needs that can only be met by states providing a full range of residential, work settings, day programs, and recreational and other services that meet the needs of this diverse population. 

Here are some excerpts from Dolan’s article:

The deinstitutionalization of people with mental illness did not go well for many people released from psychiatric facilities:

“For some, it resulted in ‘transinstitutionalization’ to prisons, homeless shelters, and emergency rooms. For others, it has meant living on the street…The situation of people with ASD is somewhat different, because their transition typically begins not from an institution, but from their families. Still, as we will see, they, together with their parents and guardians, find the same challenges in finding an appropriate community or institutional setting for treatment.”

The misinterpretation of the 1999 U.S. Supreme Court Olmstead decision:

“…From that date, institutional care would no longer be the one-size-fits all solution for the care of people with intellectual disabilities. In the years since, however, the federal government – acting through the Department of Justice (DOJ), the Administration on Intellectual and Developmental Disabilities, the Centers for Medicare & Medicaid Services (CMS), and the National Council on Disability – has interpreted Olmstead in a way that many think has turned the decision on its head.”

Quoting from the opinion of Justice Kennedy in Olmstead, “It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision. … In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.” (Olmstead at 610).

Integration for all?

“What actually happens to such people, as adults, under the integration mandate? Sorry to say, they all do not live happily ever after, bagging groceries during the day, watching TV at night, and visiting the zoo with their group-home pals on the weekend. In reality, they often cannot find small group homes that will admit them. If they do get admitted, they risk being thrown out due to inappropriate and sometimes violent behavior, or because of the inability of staff to see to their needs while also keeping up with those of other residents under a 1:4 staffing ratio.”

Suggestions that adults with ASD remain at home with their parents:

“And what happens if Mom can’t deal with the frustrated and angry outbursts of 180-pound, 20-year-old Jimmy as easily as she did when he was a toddler? What if she is injured while trying to do so? What if Jimmy accidentally hurts a stranger while he and Mom are out shopping? Situations like that trigger 911 calls. Those, in turn, as Escher points out, often degenerate into a cycle of emergency room visits due to aggressive outbursts, hospitalizations under restraint or sedation, incarceration, crisis care placement, and nursing homes. Such measures can cost much more than appropriately staffed intermediate care options and do nothing to improve the patient’s welfare.”

“…Those who really want care for all might do better to shift the rhetorical focus to appropriate care and diversity of options. The goal should be to make it clear, to people who do not have close personal experience with ASD, that the breadth of the autism spectrum defies a one-size-fits-all solution.”

Broadening the coalition:

“It should not be hard to do so. After all, adult autism care is not an inherently partisan issue. ASD strikes without regard to parents’ political views. But drawing attention to the problems posed by regulators’ narrow interpretations of Olmstead may require changing the narrative.”

“Backers of current policy have seized the rhetorical high ground with their slogan of ‘community integration for all.’ Liberals are drawn in by the words ‘community’ and ‘integration,’ while (as Justice Kennedy warned) conservatives are easily sold on small group homes and parental custody as ways of providing care ‘on the cheap.’ But there are other ways to frame the policy debate.”

“Above all, the campaign for appropriate care and diverse options for adults with ASD should emphasize that such is the law, now. ASD advocates are not asking Congress to pass new legislation. They are not asking the Supreme Court to issue new interpretations of existing law. The Olmstead decision already explicitly recognizes the 'need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities.' Regulations that are at odds with the purpose and letter of the law have caused unnecessary suffering to individuals with ASD and their families for too long already. Why wait longer? “

Indeed. Read the full article here.

See also: 

VOR Olmstead Resources

VOR Comments to the U.S. Department of Justice on Regulatory Reform

"Who Decides Where Autistic Adults Live?" by Amy Lutz 5/26/15

"The Federal Government’s Quiet War Against Adults with Autism" by Jill Escher, 4/19/16

Is the Federal Home and Community-Based Settings Rule just one more excuse not to fund needed DD services?

Jill Escher has written an insightful opinion piece about the 2014 Home and Community-Based Services (HCBS) rule. The rule restricts funding for people with disabilities to settings that meet the federal criteria for community integration. While the HCBS rule purports to protect the rights of people with disabilities to inclusive community living, Escher says that its primary goal is “to put the brakes on the creation of new residences and programs that cater specifically to adults with autism and other intellectual and developmental disabilities.” 

“The Federal Government’s Quiet War Against Adults with Autism”, from the San Francisco Bay Area Autism Society Blog, 4/19/16,  applies not only to adults with autism but to others with intellectual and developmental disabilities. Many of these adults need intensive supports, up to and including 24/7 care and supervision. Congregate care, providing services to people with disabilities in group settings, is one of many practical solutions to the need for long term care. It allows for the sharing of resources and lessening of feelings of isolation. It should not be ruled out as an option, although that appears to be the intent of many advocacy organizations. 

In my opinion, there is also a quiet war on families who are offered no other alternative but to keep their adult child with DD at home with services that may not be adequate to provide the family with the relief they need and a good quality of life for their disabled family member for the long term.

According to the article:

“As our society grapples with the dramatic surge of young adults disabled by autism aging out of school and into the vastly less supported real world, one would think every effort was being undertaken to expand programs and housing to address their serious and lifelong support needs.

“But as it turns out, precisely the opposite appears to be happening. And it stems from a quite intentional new federal policy. Even though the number-one concern of autism families is the availability of long-term care for their disabled adult children, few people seem to know about seismic shifts in the federal approach to funding that are poised to sharply restrict options.”

With HCBS expenditures skyrocketing,

“Former CMS staffer Nancy Thaler, one of the architects of the new regulations, has explained the strategy quite bluntly (see this presentation for example...) saying that to achieve financial sustainability in this era of ‘demographic global warming,’ [referring to the ever increasing medical and care needs of the baby boomer generation] she envisions a system emphasizing supports for the families, and creating a system of adult foster care exempt from the typical and costly employment and tax laws, instead of out-of-home placements such as group homes or disability-supportive communities. Close relationships, she observes, are cheaper than 24-hour paid supports, and will ‘nudge the system toward sustainability.’”

The rule has been extended by further guidance from the Centers for Medicare and Medicaid Services (CMS) on settings that are presumed to possess “institutional qualities”, 

“…wherein CMS retains what appears to be unbridled discretion to deny services funding. Also, in an unusual scorched-earth tactic to contain expenditures, the rules empower community snitches (in reality, those appear to be primarily federally funded advocacy groups) to inform CMS of programs or housing around the country they consider too congregate or disability-specific in nature.”

Disability Discrimination embedded in Law:

“One of the most troubling aspects of the new CMS rules [is] its necessary tool of overt disability discrimination. In an unprecedented move, the government is defining where a minority (here, people with developmental disabilities) can live before they can get needed social services, and promoting the idea of maximum quotas of units available to people with developmental disabilities, even in private residences. How would a senior citizen feel if told he could not receive public assistance if the government felt he lived with too many other elderly people? Should we shut off low-income housing vouchers to African Americans if more than 25% of a property is rented to people of color? Are people with Alzheimer's being told they cannot live with ‘too many’ other people with the condition? On top of the bureaucratic shenanigans, we are also talking about rank discrimination.”
 
Some reason for hope:

“There is some good news here: states retain a good amount of latitude in how they will implement the new regs. Some states will be more accepting of congregate solutions than others. It's my hope, and the hope of countless other autism families and advocates, that California allow the broadest possible range of choices for its autistic and developmentally disabled residents. … I encourage autism families to become familiar with the issues and to fight not only for their children's right to choose, but for an overall system guided by both efficiency and realism. “

Read the entire article here, and pass it on.

More information from the SFAutism Website:

May 20, 2016: Forum on HCBS in California (livestreamed)
 
Autism Society San Francisco Bay Area (SFASA) will be sponsoring a Forum on HCBS Rules in California. This event will feature officials and service providers speaking about the current status of federal funding for adults with autism in our state, and to maximize public access, it will be livestreamed for free (seating at the event is limited). The main purpose is to provide clarity about the rules as they apply in California so that families, programs and nonprofits serving the developmentally disabled can take steps to expand autism-friendly community-based offerings without undue fear of running afoul of federal guidelines when they go into effect in a few years.

Details about the event will be posted in April at the SFASA homepage
 
HCBS in California: Myths v Facts

The Coalition for Community Choice

The Atlantic: Who Decides Where Adults with Autism Live?

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 Website for information on HCBS policies and state transition plans

Illinois : Proposed bill creates new system for "Continuum of Care" centers

"Molly Bourke's Journey" is about one of the 600 people with developmental disabilities who receives services from Misericordia in Chicago, Illinois.

An article in the Illinois Herald News by Lauren Leone-Cross, 4/2/16, reports on a bill before the Illinois House of Representatives that would create a new licensing system for "Continuum of Care" centers for people with developmental disabilities:

"The bill [HB 6304] would allow the state to apply for a federal waiver under Section 1115 of the Social Security Act, allowing for 'an alternative model' of licensing, reimbursement and quality assurance. Such a waiver allows states to test out experimental and pilot programs that do not necessarily meet federal Medicaid and Children's Health Insurance Program rules." 

The legislation is being pushed with strong support from the Chicago nonprofit Misericordia, "a 31-acre continuum of care campus that services more than 600 people with a staff of 1,000." Advocates, such as the Centers for Independent Living, who oppose everything but "full community inclusion" are rallying opposition to the bill.

"Sister Rosemary Connelly, [Misericordia's] longtime director, said this alternative care method provides a choice for families of those with severe developmental disabilities.

"'Community-integrated living arrangements are not for everyone, yet it's perceived as the 'right and only way,'" Connelly said.

“'[Opponents] are really denying families the right to choice,' she added."

Federally-funded advocates who oppose the bill, claim that it violates the U.S. Supreme Court's 1999 Olmstead decision that they say mandates full community integration. This is a misinterpretation of Olmstead that is so prevalent among advocacy organizations that promote full inclusion and many government agencies that it can only be described as a purposeful misstatement of the Supreme Court decision.  

Olmstead affirms the Americans with Disabilities Act (ADA) regulation that says that "a public entity must administer services, programs, and activities in the most integrated, least restrictive setting appropriate to the needs of qualified individuals with disabilities."
[28 C.F.R. § 35.130(d)] [emphasis added]

Neither the ADA nor Olmstead support only community care or only institutional care: 

"[O]ne conclusion seems plain: some disabled individuals can benefit from community placement, and some may not. While all disabled are covered by the ADA, different remedies are recognized by the statute for different degrees of disability." [Brief at VOR et al., as Amici Curiae, in Olmstead v. L.C., at 6 (February 3, 1999)]

Under the Illinois Continuum of Care system proposed by the bill, I wonder if it would be  possible for Intermediate Care Facilities and other institutional and group settings for people with intellectual disabilities to become vital resources for their surrounding communities. This could be done by waiving part of the Home and Community-Based settings rule from CMS that makes it nearly impossible to open these facilities to non-residents living in the community. 

The current policy is to close facilities and release their residents into communities that are often unprepared for them and lack needed specialized services. More often than not, "the community" fails to live up to a utopian vision of community inclusion. 

According to the news article, "under the bill, continuum of care facilities would be required to provide community-integrated living arrangements near their campuses, employment opportunities, training programs and skilled-nursing residential care."  

This blended system with Continuum of Care centers acknowledges the need for a "Continuum of Care" to meet the "Continuum of Needs", especially for people with the most severe developmental and behavioral disabilities.

More on Misericordia...

The Olmstead Decision Has Been Misinterpreted

This is from VOR, a national organization that advocates for high quality care and human rights for all people with Intellectual and Developmental Disabilities (I/DD). Underpinning that advocacy is a respect for diversity of need and individual choice. 

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July 7, 2015

By Jill Barker, David Hart, and Tamie Hopp

The Olmstead decision, which interprets the Americans with Disabilities Act, is so clear that persistent misinterpretation by federal agencies can only be described as purposeful.

Introduction

The 25th Anniversary of the Americans with Disabilities Act (ADA) on July 26, 2015 offers an opportunity to set the record straight about what the landmark Supreme Court decision, Olmstead v. L.C., 527 U.S. 581 (1999),  actually says about the ADA’s “integration regulation.” 

The ADA’s “integration regulation” states:

“a public entity must administer services, programs, and activities in the most integrated, least restrictive setting appropriate to the needs of qualified individuals with disabilities.” [28 C.F.R. § 35.130(d)].

The Olmstead Court considered whether the ADA’s prohibition of discrimination by a public entity required “placement of persons with mental disabilities in community settings rather than in institutions.” (Olmstead at 587)

The Court’s answer: A “qualified yes.” (Id., emphasis added)

Since 1999, however, federal agencies and some advocacy organizations have lost sight of the individual when considering the rights established by the Olmstead decision. A thoughtful decision which balanced individual need, choice, and the state’s resources against a statute that also required consideration of individual needs, has been discarded for an interpretation that the ADA allows only for community placement. 

In sharp contrast, both the Olmstead decision and the ADA eschew absolutes. Neither support only community care or only institutional care:

[O]ne conclusion seems plain: some disabled individuals can benefit from community placement, and some may not. While all disabled are covered by the ADA, different remedies are recognized by the statute for different degrees of disability.” [Brief of VOR et al., as Amici Curiae, in Olmstead v. L.C., at 6 (February 3, 1999)]
 
The Olmstead decision and the law are so clear that persistent misinterpretation by federal agencies can only be described as purposeful.

The History of the Olmstead Decision: Lois Curtis, Elaine Wilson, and VOR

In 1995, two women, Lois Curtis and Elaine Wilson, courageously pursued their right under the ADA and its integration regulation to receive person-centered services and supports in the most integrated setting appropriate to their individualized needs. Their lawsuit against the State of Georgia, Olmstead v. L.C., made it all the way to the Supreme Court, and in 1999, culminated into what is now recognized as the landmark decision interpreting the ADA’s Title II “integration regulation.”

VOR is a national, nonprofit advocacy organization that has for 32 years supported the right of individuals with intellectual and developmental disabilities (I/DD) to receive services and supports according to their individual choice and need, regardless of setting. VOR and 141 of its affiliates and supporting organizations stood by Lois and Elaine, filing an Amicus Curiae brief in support of their right to receive community-based supports, while also arguing that the ADA does not mandate a singular placement option – the community – for all citizens with disabilities. Instead, VOR argued that the ADA’s protections extended to individuals with “degrees of disability” who are entitled to receive services, supports and accommodations according to what is most “appropriate to the needs of the individual,” which may sometimes be an institution.

Quoting VOR’s brief, the Court agreed:
 
“‘Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case-by-case basis, that setting may be in an institution.’” Olmstead v. L.C., 527 U.S. 581, 605 (1999) (quoting Brief of VOR et al., as Amici Curiae at 11).

The Court was clear that the ADA’s integration regulation does not mandate that people with disabilities be forced from facility-based care (“institutions”) when doing so was not appropriate to individual needs or contrary to individual choice.

The Court found that Lois and Elaine had suffered discrimination under the ADA, pointing to Lois and Elaine’s choices, their treating professionals opinion that for them community placement was appropriate factored directly into the Court’s holding, and the fact that the State had agreed to provide such services. Accordingly, the Court held community placement is only required (not always required), and institutionalization is only “unjustified,” when -

“[a] the State’s treatment professionals have determined that community placement is appropriate, [b] the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and [c] the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. Olmstead, 527 U.S. at 587 (emphasis added). 
 
The Court expressly recognized an ongoing need for facility-based care (“institutional” care) for some individuals with disabilities, stating –

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Id. at 601-602.
 
Purposeful Misinterpretation
 
Olmstead is often incorrectly referred to as a community-only / deinstitutionalization mandate by disability advocates. Federal agencies, such as the Department of Justice (DOJ), the Administration on Intellectual and Developmental Disabilities (AIDD), the Centers for Medicare & Medicaid Services (CMS), and the National Council on Disability (NCD) perpetuate this misinterpretation of the Olmstead decision and pursue forced deinstitutionalization.

NCD, an agency within the U.S. Department of Health and Human Services, has published “Deinstitutionalization: Unfinished business” which encourages the closure and displacement of individuals with profound disabilities from homes of four or more residents, without regard for individual choice and need and contrary to Olmstead.

AIDD, within HHS, has likewise denigrated a proven system of facility-based care through lobbying, class action lawsuits and other tactics in support of forced deinstitutionalization, aimed at evicting the most vulnerable people with I/DD from their facility homes, under the guise of “integration” for all, contrary to Olmstead.

CMS finalized a new regulation that defines “community” settings for the purpose of receiving Medicaid Home and Community-Based Services (HCBS) funding. Although the rule does not require the elimination of congregate settings for providing residential and other services to people with I/DD, it certainly encourages such closures. For people with the most severe disabilities and highest needs, this may very well prove costly to states, if they maintain the same level of service for these individuals in non-congregate settings. Instead, the historical and more likely reaction by cost-conscious states will be to reduce services by eliminating congregate settings based on the allegation that the need for them has decreased when it has not, or reducing services by eliminating congregate settings just to avoid having to justify them to CMS and ideologically motivated advocacy groups, regardless of the needs and preferences of the individuals involved. Closing community congregate settings in response to the new rule will add to the existing gap in services left by historic deinstitutionalization. As a result, the whole system of care is likely to be undermined in the name of inclusion and integration, and contrary to Olmstead.

The DOJ’s Civil Rights Division is charged with enforcing “federal statutes prohibiting discrimination on the basis of race, color, sex, disability, religion, familial status and national origin,” including the ADA. Its technical assistance website on Olmstead is titled:

    “Olmstead: Community Integration for Everyone”

These are not mere words. DOJ’s Olmstead enforcement actions bear out an interpretation of Olmstead that mandates “community integration for everyone” by pursuing forced deinstitutionalization, without any regard to the choice or needs of affected individuals, contrary to Olmstead. Consider U.S. v. Arkansas in which Federal Judge J. Leon Holmes in the first paragraph of his decision dismissing DOJ’s claims wrote:

Most lawsuits are brought by persons who believe that their rights have been violated. Not this one. The Civil Rights Division of the Department of Justice brings this action on behalf of the United States of America against the State of Arkansas and four state officials in their official capacities alleging that practices at Conway Human Development Center violate the rights of its residents guaranteed by the Fourteenth Amendment, the Americans with Disabilities Act, and the Individuals with Disabilities Education Act. All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons—through their parents and guardians—disagree. U.S. v. Arkansas, 4:09-cv-33 ( 2011, E.D. Ark.) (emphasis added).

Over 150 media reports in more than 30 states in the past two decades reveal systemic concerns in small settings for people with intellectual and developmental disabilities (I/DD), including deaths, abuse, neglect, isolation, and financial malfeasance.

Across the country, thousands of fragile citizens have needlessly died in community settings as advocates aggressively pursued community integration without regard to the preparedness of these settings to receive fragile individuals, even while proponents began to acknowledge the predictable problems. As noted Samuel Bagenstos, former Principal Deputy Assistant Attorney General in DOJ’s Civil Rights Division and a key litigator in deinstitutionalization cases –

“It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.”[“The Past and Future of Deinstitutionalization Litigation,” 34 Cardoza L. Rev. 1, 21 (2012)].

More recently dramatic increases in mortality of individuals with I/DD in community settings has been widely publicized in Georgia and Virginia, two states which are in the process of implementing DOJ Olmstead settlements. In Georgia, there have been nearly 500 deaths in both 2013 and 2014 of individuals with I/DD in community settings, including 62 individuals who transferred from facility-based care per settlement requirements. In Virginia, the rate of mortality of those individuals with I/DD who transferred from facility care per settlement terms is double that of facility-based individuals.

Conclusion

Like the integration regulation itself, the Supreme Court’s decision requires consideration of an individual’s needs, while also holding that individual choice also matters.

However, don’t take our word for it.  Read the Olmstead decision.

There are tragic outcomes that lie in the wake of forced deinstitutionalization, which since 1999 has been improperly pursued in Olmstead’s name.

Lost in pursuit of the “integration” ideal is concern for the individual. Person-centered planning, which is held up as the ideal by the government, advocates, and nonprofit organizations alike, is short-changed by system change advocacy to eliminate specialized care options for those who need it, which is exactly what the Olmstead court cautioned against. Instead, Olmstead and the ADA reinforce the right of choice, requiring a level of integration that meets the needs of the individual.  This right of choice is preserved only if we maintain a full range of options to meet the full range of needs for a diverse population.

About the Authors

Jill Barker is the First Vice President of VOR. She has two sons with profound intellectual and developmental disabilities living in a community setting in Michigan. David Hart, from Massachusetts, is the Chair of VOR’s Legislative Committee. Tamie Hopp, from South Dakota, is the former VOR Director of Government Relations & Advocacy and currently a volunteer for VOR. More information can be found at www.vor.net.

Documentary on Workshops for DD going out of business : "A Whole Lott More"

Trailer for "A Whole Lott More"

This is a documentary from 2013 that was shown on Link TV in Detroit today. It is about workshops for people with DD in Toledo, Ohio, being forced out of business by a bad economy, a slow and inefficient DD service system that controls the workshops, and a philosophy that everyone can work in community employment. The people who suffer most, the ones who work in the workshops, seem the least likely to be able to bounce back from unexpected closures and the loss of relationships with their employers and fellow workers. "I wish we had a miracle," says one of the workers, "but they don't happen to people like us."

Texas: When commuity care fails a person with severe DD

The Texas Fort Worth Star-Telegram ran a two-part series by Deanna Boyd investigating the tragic 2013 death of a 39-year-old woman with severe multiple disabilities who was receiving Medicaid-funded Home and Community Based services while being cared for by her sister and father:

• "Failing Marci: A disabled woman’s story of triumph and tragedy", 2/27/15
• "Failing Marci: Investigation raises questions about care and oversight for disabled woman", 3/1/15

Even with her multiple severe disabilities, Marci Garvin lived at home, attended a regular school, and later worked in paid supported employment. Her mother was a proponent of full inclusion and Marci’s story was an inspiration to others that someone with disabilities as severe as hers can live a full life in the community and work at a paying job. How, then, did Marci Garvin end up in the hospital, two days before she died, with “more than 20 major bedsores…covered in urine, feces and bugs..." at almost half her normal weight?

According to the Fort Worth Star-Telegram, “Marci spent her last years under the primary care of an increasingly overwhelmed sister battling her own mental illness while also caring for a special-needs daughter and an ailing mother…” Marci's sister, Tabby Martinjak, admitted to investigators that she was being treated “for...hoarding, as well as other mental illness, including bipolar disorder, manic depression, post-traumatic stress disorder and obsessive-compulsive disorder.”

Also, according the news reports, “The [Texas] Department of Disability and Aging (DADS) contracts with both public and private HCS [Home and Community-Based Services] providers, reimbursing them with Medicaid dollars. As of December, 21,676 clients were receiving HCS services in Texas with more than 72,000 on a waiting or 'interest' list….Marci was enrolled in the program’s foster care option, allowing her to receive services from her HCS provider while living at home. Her mother, and later Martinjak, were paid for being Marci’s primary caregiver, receiving about $3,000 a month in Medicaid funding at the time of the Marci’s death.”

Investigators found a lack of oversight in Marci’s tragic death: 

• " Employees of the two service providers and MHMR knew that Martinjak was a hoarder whose boxes of possessions and clutter reached from floor to ceiling of the family’s southwest Fort Worth home, but they did little to address it despite the fire and safety risk it posed. Martinjak repeatedly avoided home visits and inspections, yet was allowed to continue her paid role as foster care provider for her sister.
• "Dianne Salas, a care coordinator with Southern Concepts at the time of Marci’s death, was required to assess Marci’s home yearly but hadn’t been inside the Garvins’ house since 2010. Still, Salas filled out home assessments in 2011 and 2012, stating that the home was safe for Marci.
• "Marci had not seen her primary care doctor since 2010 despite contrary statements from her sister and had not received a required nursing assessment from her service provider."

Although Home and Community-Based Services are invaluable to families who choose to keep disabled family members at home and engaged in their communities, a lack of oversight, unrealistic demands on caregivers, and neglect can lead to tragic events such as this. The reporter Deanna Boyd,from the Fort Worth Star-Telegram, has done an excellent job of covering this important story.

New Jersey: Not Happy with HCBS Transition Plan

This is from a good autism blog, Inspectrum: Reports from the world of severe autism by Amy S. Lutz. Amy attended two public comment sessions on the state's HCBS Transition Plan at the New Jersey Department of Developmental Disabilities. She estimated that approximately 50 people spoke, but only two were in favor of the plan:
...

"These opponents were a diverse group, including individuals with developmental disabilities, parents, siblings, providers, and advocates. But certain themes emerged:
    •    "That perhaps the state had not acted in good faith by failing to notify present and potential waiver recipients of the proposed changes by letter or email blast; by scheduling the first of only two public comment sessions the day after the plan was released, before stakeholders really had a chance to wade through it (that session fortunately had to be rescheduled due to snow); by organizing far fewer opportunities for public comment than other states; and by overall neglecting to solicit the input of individuals with disabilities, their families, and the providers that serve them before crafting the regulations in the first place
    •    "That New Jersey’s plan to exclude congregate settings serving more than six people and to mandate that no more than 25% of the units in all apartment buildings and communities be occupied by waiver recipients unfairly precludes individuals with disabilities from choosing to live wherever and with whomever they please – a right freely enjoyed by those of us without disabilities
    •    "That the proposed requirement that day program recipients spend 75% of their time offsite in the community is expensive and impractical – particularly for those with severe medical and behavioral challenges
    •    "That countless individuals, finally thriving on campuses, farmsteads, or sheltered workshops, would be needlessly uprooted (“It took me 18 years to find the right program for my daughter,” one mom stated. “I’m 72 years old – I don’t have another 18 years.”
…

Read more here...

From CMS: The new HCBS rule and State Assessments for Residential Settings

The federal Centers for Medicare and Medicaid Services (CMS) issued a document called "Exploratory Questions to Assist States in Assessment of Residential Settings".  This is part of the “Settings Requirements and Compliance Toolkit” which is found on the Website of hcbsadvocacy.org. This is the best place I have found to find information about the Home and Community-Based Services rule issued by CMS in January 2014. It includes state-by-state information on transition plans and CMS interpretations of the rule so far.
 
The "Exploratory Questions..." document begins with this statement: “This optional tool is provided to assist states in assessing whether the characteristics of Medicaid Home and Community-based Services, as required by regulation, are present. The information is organized to cite anticipated characteristics and to provide suggested questions to determine if indicators of that characteristic are present.”

Many of he questions assume that the individual is capable of making and expressing the choices that are set out in the document, but if the individual has a court-appointed legal guardian, the guardian makes decisions to the exent authorized by the court.  See “…HCBS rule confirms decision-making authority”.

The HCBS rule does not define many of the terms that are used to determine whether the setting is considered “too institutional” according to CMS, starting with the terms “community” and "access". The second set of questions are characterized by this statement: “The individual participates in unscheduled and scheduled community activities in the same manner as individuals not receiving Medicaid HCBS services.” How do people not receiving HCBS services participate in community activities? I don’t have a clue how to answer that question and neither does anyone else.

There are no “right” answers for any particular question. For example, a "yes" answer to “Can the individual close and lock the bedroom door?” is intended to indicate that the person has some privacy.  For my sons, who cannot manipulate a lock and do not know what a lock is for, a locked door that prevents the group home staff from responding to an immediate need for help or allows someone to lock themselves in the room with my sons is a clear danger to their safety with no advantages to them at all. A "no" answer without qualification does not convey other considerations for their safety and well-being.

The advantage of reading through the “Exploratory Questions” is that it will give individuals and families a better idea of the choices that should be offered. This could be very helpful in expanding the possibilities that one considers in determining an appropriate residential setting.

Clarification of the HCBS rule from CMS

In Memory of Lewis, the garden store cat

The federal Centers for Medicare and Medicaid Services (CMS) issued a rule in January 2014 that attempts to define the settings in which people with developmental and other disabilities can receive Home and Community-Based Services (HCBS). HCBS are paid for with Medicaid funds under Medicaid waiver and state plan programs. In Michigan, this rule applies to Medicaid Waivers that include the Habilitation Supports Waiver (HSW) for people with DD and the Children’s Waiver Program (CWP). The more generally available CMS-approved state plan services and other programs for people who are elderly or have physical or mental disabilities are also covered by the rule.

According to a Fact Sheet on the HCB settings rule, “the changes will …maximize the opportunities for participants in HCBS programs to have access to the benefits of community living and to receive services in the most integrated setting and will effectuate the law’s intention for Medicaid HCBS to provide alternatives to services provided in institutions.”

People with disabilities and their families should be forewarned that much of what they hear about the rule may not be what the rule actually says or how the CMS interprets it. The rule is confusing, however, and lends itself to the kind of controversy it has been generating. It needs fixing, but for now this is what we have to live with.
 
Some alarming statements have been made about what the rule means for people living and receiving services in congregate settings where more than a  few people with disabilities are served together. The rule does not define the term “congregate” or "community" nor does it give a magic number at which point CMS believes that people with disabilities associating with one another are in danger of losing their civil rights. How the rule is being interpreted varies widely. 

At a Waiver Conference sponsored by the Michigan Association of Community Health Boards (MACMHB) in November 2014, the person presiding over a session on the detailed requirements of the new rule gave her opinion that by the time the rule is fully implemented in March 2019, congregate settings will no longer be funded by Medicaid because they will not meet the requirement to integrate people with disabilities into the community. The federal CMS interpretation of its own rule is different from that given at the Waiver Conference.

Most people with disabilities and their families welcome changes that call for better enforcement of rights that are already in place and improvements in conditions that make life better for people with disabilities, but the new rule could cause unnecessary disruption and hardship, depending on how it is interpreted. Although the rule purports to be the fulfillment of the Americans with Disabilities Act and its interpretation by the Supreme Court in the Olmstead decision, that is a dubious claim. 

The HCBS rule is being interpreted by many disability advocates as a requirement for states to impose on people with disabilities and their families the ideology of Full Inclusion, the idea that everyone can and should be fully integrated into the community (whatever that means), regardless of the severity or nature of a person’s disability; anything separate or different, no matter how necessary it is to the comfort and survival of the person with a disability, is considered to be inherently isolating and segregating.  The adoption of this interpretation of the rule by the state, could limit individual choice and diminish the quality of services available for a population of people with widely diverse needs.

There are some things in the rule and the CMS interpretation that can mitigate the potential harm to people in programs under the most scrutiny, including programs or residential care provided in congregate settings. In this document that includes “Questions and Answers Regarding Home and Community-Based Settings”, the CMS sets out some of the principles in implementing the HCBS rule. READ THE DOCUMENT. I have selected some of the things I think are important to know, but you may pick up on other parts that are more important to you:


Public Notice and Comments

The first part of this document deals with Public Notice and Comments. This link to HCBSAdvocacy.org provides information on due dates for comments, state documents, and other information. A few of the links at this Website are incorrect or don’t work, but overall, it seems to be the best source of information and the easiest Website to use. Another source is the Michigan Department of Community Health Website.

Home and Community-Based (HCB) Settings - General

Q. #3: Does the HCB setting requirement apply to an enrollee’s private home or the relative’s home in which an enrollee resides?
A. The regulations allow states to presume the enrollee’s private home or the relative’s home in which the enrollee resides meet the requirements of HCB settings. … While a private home may afford the individual a home-like setting, the person-centered plan and provision of appropriate services that support access to the greater community are critical components to ensure community integration, especially for an individual with limited social skills.

Q.#4: Is there a minimum number of residential settings that must be offered to an individual?
A. …an individual must be able to select among setting options that include non-disability-specific settings and an option for a private unit in a residential setting. The individual’s person-centered plan should document options …considered…based on the individual’s needs, preferences, and for residential settings, resources available for room and board.

Q. #6: What is the meaning of “non-disability-specific settings”? does this requirement mean that the options must include settings in which other individuals with similar disabilities do not reside or receive services and support?
A. “Non-disability-specific” …means that among the options available, the individual must have the option to select a setting that is not limited to people with the same or similar types of disabilities….People may receive services with other people who have either the same or similar disabilities, but must have the option to be served in a setting that is not exclusive to people with the same or similar disabilities.

Q. #7: What is the meaning of a “private unit in a residential setting?” Does this mean that an individual must be afforded the option of a private bedroom regardless of the individual’s financial resources to pay for room and board?
A. …The regulatory requirement acknowledges that an individual may need to share a room due to the financial means available to pay for room and board or may choose to share a room for other reasons. However, when a room is shared, the individual should have a choice in arranging for a roommate.

HCBS Settings - Residential

Q. #1: Are settings on the grounds of or adjacent to “private” institutions considered not to be home and community-based (HCB)?
A. It depends. [Such settings] are not automatically presumed to have the characteristics of an institution. However, if the setting isolates the individual from the broader community or otherwise has the characteristics of an institution or fails to meet the characteristics of a home and community-based setting, the setting would not be considered to be compliant with the regulation….A state’s assessment of settings that isolate should be informed by the public comments received prior to submission of the transition plans. Also, states may elect to adopt more stringent settings characteristics that would not allow a setting to be on the grounds of a private institution….

[Comment: Let’s hope that the comments of the individual’s and families who are directly affected by the state’s assessment are given more weight than comments from people who have little direct knowledge of the setting in question nor any stake in the assessment process and are driven primarily by their own ideology of where people with disabilities should live.]

Q. #2: Must the individual be given a key to his or her bedroom door and be permitted to carry it outside the residence? What types of staff or caregivers would not be considered appropriate to have keys to and individual’s bedroom?…
A. Individuals should have access to their homes at all times unless appropriate limitations have been determined and justified in the person-centered plan…[There are conditions under which the requirements of the rule can be modified depending on the individual’s assessed need for something different.]

Q. #5: Do the [HCB] requirements address the number of individuals living in a residential HCB setting?
A. No. While size may impact the ability or likelihood of a setting to meet the HCB settings requirements, the regulation does not specify size…The HCB rule defines the minimum qualities for a HCB setting as experienced by the individual; states may set a higher threshold for HCB settings than required by the regulation, including the option to establish size restrictions and limitations.

HCB Settings-Non-Residential

Q. #1: Are settings on the grounds of or adjacent to “private” institutions considered not to be home and community-based (HCB)?
A. It depends. [Such settings] are not automatically presumed to have the characteristics of an institution. However, if the setting isolates the individual from the broader community or otherwise has the characteristics of an institution or fails to meet the characteristics of a home a [HCB] setting, the setting would not be considered to be compliant with the regulation…
 
Q. #4: Does the regulation prohibit facility-based or site-based settings?
A. No. The regulation requires that all settings, including facility- or site-based settings, must demonstrate the qualities of HCB settings, ensure the individual’s experience is HCB and not institutional in nature, and does not isolate the individual from the broader community…

Q. #5: do the regulations prohibit individuals from receiving pre-vocational services in a facility-based setting such as a sheltered workshop?
A. No. …a state could allow pre-vocational services delivered in facility-based settings that encourage interaction with the general public (for example, through interaction with customers in a retail setting)….

Q. #6: Will CMS allow dementia-specific adult day care centers?
A. the HCBS regulations do not prohibit disability-specific settings: as with all [HCB] settings …, the setting must meet the requirements of the regulation, such as ensuring the setting chosen by the individual is integrated in and supports full access of individuals receiving Medicaid HCBS to, the greater community, that individual’s rights of privacy, dignity and respect and freedom from coercion and restraint are respected, etc. …

Q. #9: If a state determines that a current HCB setting is not compliant with the new regulation, does it have to stop providing services in that setting immediately?
A. No. …the state has until March 2019 to bring its HCBS programs into compliance with the rule, consistent with its State Transition Plan. States can claim federal matching funds for these services during the transition period.

HCB Settings - Restrictions

Q. #2: What, if any, restrictions on an individual’s choice of roommates, visitors or with whom to interact (e.g., when there is documented history of abuse or exploitation by another individual) are permissible?
A. An individual’s rights, including but not limited to roommates, visitors, or with whom to interact, must be addressed as part of the person-centered planning process and documented in the person-centered plan. Any restrictions on individual choice must be focused on the health and welfare of the individual and the consideration of risk mitigation strategies. The restriction, if it is determined necessary and appropriate in accordance with the specifications in the rule, must be documented in the person-centered plan, and the individual must provide informed consent for the restriction.

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States have a great deal of discretion in the services they provide to Medicaid beneficiaries under state plans and waiver programs. Assuming that the federal HCBS rule remains in its present form, the action right now and probably for the next 5 years will be at the state level. Active participation by people with disabilities and their families is the best way to assure that the state will provide a full array of services and choice to people with disabilities.

Also, see sections of the HCBS rule that recognize the authority of court-appointed guardians to make decisions on behalf of their family member or ward.

One Family's Quest for True Integration and Person-Centered Care

[This is from the Fall 2014 VOR print newsletter, "The Voice - news and views of VOR Supporters". Helen Norcross lives in Wyoming.]

Helen Norcross is a firm believer in community integration and a person-centered approach to planning care.

She has been a lifelong advocate for her son, Josh, who has profound behavioral challenges, and recently quit her job in corrections/treatment to work for the Wyoming Independent Living Center.

She knows how integration should look for her Josh, but seriously questions whether the State of Wyoming does.

"For me, community integration and true inclusion means my son is provided with opportunities to live his life to the fullest extent of his abilities while keeping him and others in our community safe," explains Norcross. "It's about really focusing on Josh. It's about person-centered supports, with an emphasis on the person."

Josh's early years

For years, Helen and her family attempted to strike a balance between integration and safety. This involved wiring her family home with buzzers so that they knew where her son was at all times.

"Josh's disabilities make him unsafe for other people and animals," shared Norcross. "We had a responsibility to keep our younger son safe, as well as our understanding neighbors. Still, to live with alarms that the whole neighborhood could hear if Josh went out the door was exhausting and stressful --and certainly did not mean 'community integration' for him."

As Josh grew so did his challenges and needs. "We were all prisoners in our own home, completely isolated," she said.

So, Norcross called in that promise made by the State so many years ago when they adopted Josh, only to find that he along with about 500 other eligible Wyomians with disabilities, faced years of waiting.

Hope evaporates

In March 2014, after over a year of back-and-forth negotiations, the State had finally approved Josh's waiver application as an "emergency case," and, recognizing Josh's profound needs approved funding at the highest level of care and supervision allowed under the waiver.

With approval in hand, Norcross set out to find a provider willing to serve Josh. After 3 months of looking and rejecting providers, or being rejected by providers that did not have the staff or experience necessary, a quality provider was identified and willing to serve Josh and, much to the gratitude of the Norcrosses, also provide for day habilitation which his waiver funding did not cover.

However, Norcross' diligence in finding the right provider for Josh's needs--a person-centered approach to delivering services--backfired because not enough money was spent on Josh's care while Norcross was looking for a provider. The Wyoming Behavioral Health Department assumed Josh did not need these services and significantly cut his approved funding.

"No one thought to call me," said Norcross. "I could have told the Department that the services were not used because I was still trying to find a provider. Josh's needs certainly didn't change. Yet, we were back to square one."

She now wonders just how the Wyoming Behavioral Department defines "person-centered." Having worked in treatment for so many years and also raising Josh, Norcross understands the person-centered approach better than most.

"I've had intensive training in this approach and have seen it work with the most challenging individuals," Norcross said. "It's really about treating people like people and respecting differences in choices and needs."

The Journey Continues

Norcross continues to advocate for Josh using a person-centered approach and will fight to make sure that all funding taken from his Plan of Care will be restored.

Still, she is frustrated by the fight and worries for other families who don't know the system as well.

"Because Josh's behaviors affect other people, putting the community at risk if funds are not restored, there should be urgency to getting him appropriate  care," said Norcross. "My advocacy is critical in helping the State see that urgency, but what about other families who are suffering in silence? I worry about these people."

Norcross also questions how a "systems change" approach toward full inclusion and integration can also be person-centered care.

"'Integration' is being pushed as the ideal, but blindly so," said Norcross. "My family home, wired like prison, is considered 'integrated.'"

Norcross hopes her work with the Wyoming Independent Living Center will provide her opportunity to reframe the dialogue.

"We've lost sight of concepts like 'community integration' and 'person-centered supports,'" she says. Families, advocates and elected officials must re-direct collective focus away from 'bricks and mortar' and back on each individual."

My son's needs are unique and personal to him," added Norcross. "What he needs and what I want for him will be different than another individual and another family. Our system must be responsive to individual needs and choice. I am a fighter and I do not give up. I will continue working to change that."

MI HCBS Transition Plan - comments due 12/24/14

The Michigan Department of Community Health has released its transition plan for implementation of the federal Home and Community Based settings rule that was issued in January 2014. The announcement begins with a summary of the purposes of the rule. This characterization does not include any of its negative features such as limiting choice for individuals with DD who choose to live or receive services in congregate settings (more than 3 or 4 people with disabilities living  or receiving services together), including planned or intentional communities. Neither does it include exceptions to the rule for health and safety reasons.

To decipher the acronyms used in the transition plan document, refer to page 1, row 1, and the last two columns to the right under "Sources" and "Key Stakeholders". 

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The Centers for Medicare and Medicaid Services recently made a new set of rules for the delivery of Home and Community Based Services through Medicaid waiver programs. Through these rules, the Centers for Medicare and Medicaid Services aim to improve the experience of individuals in these programs by enhancing access to the community, promoting the delivery of services in more integrated settings, and expanding the use of person-centered planning. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting's location, geography, or physical characteristics.

Overview of the Settings Provision

The final rule requires that all home and community-based settings meet certain qualifications. These include:

* The setting is integrated in and supports full access to the greater community;
* Is selected by the individual from among setting options;
* Ensures individual rights of privacy, dignity and respect, and freedom from coercion and restraint;
* Optimizes autonomy and independence in making life choices; and
* Facilitates choice regarding services and who provides them.

The final rule also includes additional requirements for provider-owned or controlled home and community-based residential settings. These requirements include:

* The individual has a lease or other legally enforceable agreement providing similar protections; 
* The individual has privacy in their unit including lockable doors, choice of roommates and freedom to furnish or decorate the unit;
* The individual controls his/her own schedule including access to food at any time;
* The individual can have visitors at any time; and
* The setting is physically accessible.

Below please find links to Michigan's HCBS Transition Plan as well as links to source documents about the HCBS rule change from the Centers for Medicaid and Medicare Services.


The MI Home and Community Based Settings rule Transition Plan

The Department released the draft plan for public comment on November 24, 2014 and will be accepting comments until December 24, 2014. You may submit comments regarding the transition plan by e-mail to:

HCBSTransition@michigan.gov

or by mail to:

Attention: HCBS Program Transition
Medicaid Policy
Michigan Department of Community Health
P.O. Box 30479
Lansing, Michigan 48909-7979

All comments on this topic should include a "HCBS Transition Plan Comment" reference somewhere in the written submission or in the subject line if an e-mail is used. Comments and related responses will be available on this website following the end of the comment period. Please list or summarize your comments in a document or email. Please do not submit an electronic version of the draft statewide transition plan using the "track changes" function.

The purpose of this review and comment on the draft statewide transition plan is to develop and implement the best plan and process possible for review and assessment of settings. Discussion regarding evidence that a particular setting is "home and community-based" and/or similar comments will not be considered. Please limit your comments to the content of the draft plan.

-MDCH Website

Centers for Medicare and Medicaid Services
The Centers for Medicare and Medicaid Services have provided fact sheets, webinar slides, informational bulletins, and toolkits HERE .

Frequently Asked Questions on HCBS settings

These FAQs on the Home and Community Based Services (HCBS) settings rule are from ACCSES, a national organization representing disability service providers. They are helpful in understanding the HCBS rule:

September 2014
 
Frequently Asked Questions Regarding the Home and Community-Based Services (HCBS) Setting Requirement and the Full Array of HCBS Services  

1. Does the rule regarding home and community-based services settings continue to permit the full array of home and community-based services, as defined in the Medicaid HCBS statute and regulations and included in the individual’s person-centered plan? 

Yes. As we indicated in the section-by-section analysis accompanying the final rule “the final rule will continue to convey this flexibility for states.” [79 FR 2954 (January 16, 2014)] Consistent with the Americans with Disabilities Act and the Olmstead decision, the state must administer the full array of home and community-based services in the most integrated setting appropriate to the needs of qualified individuals with disabilities. In addition, the state, in providing these services, directly or through contract or other arrangement, may not provide different or separate services unless such action is necessary to provide qualified individuals with disabilities with services that are as effective as those provided to others. [28 CFR 35.130(b)(1)(iv) and 35.130(d)]

2. Does the full array of home and community-based services defined in the Medicaid HCBS statute and regulations include prevocational services?
 
Yes. Prevocational services are defined in the regulations [42 CFR 440.180] to mean habilitation services that prepare an individual for paid or unpaid employment and that are not job-task oriented but are instead aimed at a generalized result, for example, teaching an individual such concepts as compliance, attendance, task completion, problem solving and safety.
 
As specified in the regulations, prevocational services are distinguishable from noncovered vocational services by the following criteria [42 CFR 440.180]:

• The services are provided to persons who are not expected to be able to join the general workforce; 
• If the beneficiaries are compensated, they are compensated at less than 50 percent of the minimum wage; 
• The services include activities which are not primarily directed at teaching specific job skills but at underlying habilitation goals (for example attention span, motor skills); and 
• The services are reflected in a plan of care directed to habilitation rather than explicit employment objectives.

Prevocational services, as a form of habilitation services, are designed to assist individuals acquire, retain, and improve self-help, socialization and adaptive skills. [42 U.S.C. 1396n(c)(5)] 

Prevocational services are time limited and the time limitations are determined based on the individual’s needs, including the need to retain skills, as identified in his or her person-centered plan. [September 16, 2011 Information Bulletin at page 7]

 3. May prevocational services be provided in a variety of locations in the community, including fixed site facilities?
 
Yes. Consistent with an individual’s person-centered plan, prevocational services may be furnished in a variety of locations in the community, including fixed site facilities but prevocational services are not limited to fixed site facilities. [September 16, 2011 Information Bulletin at page 8]

4. Must prevocational services provided in fixed-site facilities satisfy the home and community-based setting requirement?
 
Yes. The final HCBS setting rule establishes affirmative outcome-based criteria rather than criteria based solely on a setting’s location, geography, or physical characteristics. [79 FR 3011 (January 16, 2014)] Thus, prevocational services and other home and community-based services that are provided in fixed-site facilities must meet the HCBS setting requirements set forth in the rule [79 FR 3013 January 16, 2014)], including the requirement that the setting is integrated in and supports full access of individuals receiving Medicaid HCBS to the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, to the same degree of access as individuals not receiving Medicaid HCBS [42 CFR 440.301(c)(4)(i)-(vi)].

5. What practices illustrate the qualities of a home and community-based setting in a fixed-site facility providing prevocational services?

Example of appropriate practices regarding the provision of prevocational services in fixed site facilities that illustrate the qualities of a home and community-based setting include:

• The program is in a facility that resembles any other business of its size and scope; Individuals are working on production of goods and services for the greater business community, similar to other businesses; 
• The program may serve populations other than HCBS participants with disabilities, including
  Veterans, individuals who are poor and under-privileged and need assistance; 
• Participants are provided an overview of employment options, including discussions about and referrals to state vocational rehabilitation and other programs for competitive integrated
  employment; 
• Community competitive integrated employment is discussed, encouraged, and promoted at every review, and the person is directly involved in making an informed choices, as well as during the delivery of prevocational services; and 
• Prevocational services include opportunities to gain greater exposure to the greater community and to teach individuals how to access the greater community, including trial work experiences, and internships, and tours of local businesses.

6. If a program provided in a fixed-site facility satisfies the home and community-based services setting outcome-based criteria set out in 42 CFR 440.301(c)(4)(i)-(vi), does the program qualify for HCBS funding?

Yes. The program conforms to the HCBS setting characteristics and thus may receive HCBS funding.