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.”
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Read more here...
February 20, 2015, is the due date for comments on Michigan’s proposed assessment tools for determining whether settings that use Medicaid Waiver funding comply with the federal Home and Community-Based Services (HCBS) settings rule. The plan is to send surveys to residents, service providers, and Prepaid Inpatient Health Plans (PIHPs) [regional mental health agencies] to determine whether settings are sufficiently integrated into “the community” to meet the new standard.
The Michigan plan to assess compliance with the HCBS settings rule falls short in the same way that the HCBS rule itself falls short: it leads to arbitrary standards that at their core have little to do with the needs of individual recipients of services (people with developmental and other disabilities) and more to do with pressuring states and local agencies to eliminate Medicaid-funded congregate care (specialized services provided to people with disabilities in group settings.) We know this for a fact because of earlier versions of the HCBS rule that explicitly sought to disqualify most congregate settings, based on the number of participants and whether they served only people with disabilities.
Because of the uproar caused by the proposed HCBS rule before it was issued in its final form, the Centers for Medicare and Medicaid Services (CMS) backed down on the more arbitrary aspects of the rule. This has not stopped federally-funded disability rights and advocacy groups from misrepresenting the final rule as a mandate to eliminate congregate care and to shift funding to services and settings that are more in tune with their ideological world view.
For a long time, federally-funded disability rights and advocacy groups and some federal agencies have been misinterpreting federal mandates that protect individual rights to appropriate services. To counteract this, the state needs to provide information along with the surveys that assure individuals and their families, services providers, and local agencies that the surveys are not going to result in the wholesale elimination of services and settings that many people with disabilities need. Otherwise, there is a danger that service providers will bail out of providing necessary services because they fear confrontation with the federal and state government and with federally funded advocates. As a parent, I can think of nothing more panic inducing than being asked to fill out forms that appear to be designed to remove my adult children from service settings that they need and rely on.
A Cover Letter should accompany the survey that includes accurate and complete information about the HCBS rule so that individuals, providers of services, and agencies are better informed of their rights to services in the most integrated setting appropriate to their individual needs.
The Cover Letter
To begin with, the cover letter should include this paragraph from page one of the Summary of Key Provisions in the HCBS settings Final Rule:
“In this final rule, CMS is moving away from defining home and community-based settings by ‘what they are not,’ and toward defining them by the nature and quality of individuals’ experiences. 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."
Along with the HCBS settings rule, the state must take into account individuals who may need separate services or residential options. The ADA and the 1999 Supreme Court Olmstead decision do not rule out this possibility. There are many medically necessary services that people with the most severe disabilities and behavioral challenges need for survival that cannot be provided safely or reasonably in a non-congregate setting.
Clarify that the setting, or rather the provider of services in a particular setting, is not always responsible for an individual’s lack of involvement in “the community”. There is usually a shared responsibility between service providers, agencies, and families to assure that individuals have the supports they need to be involved in their communities to the extent appropriate, based on their needs and preferences. The specifics of how this will be accomplished should be included in the individual’s person-centered plan and Individual Plan of Service.
People responding to the surveys should also be directed to the document from the Centers for Medicare and Medicaid Services (CMS) on “…Questions and answers Regarding Home and Community-Based Settings” It is clear from this document that, for the most part, there are no settings that are automatically excluded from using HCBS funding, although there must be evidence that supports compliance with the rule. In other words, there are no right or wrong answers to the questions.
Clarify that the HCBS rule does not change the authority of court-appointed guardians, most of whom are family members or close friends of the individual. Guardians continue to make decisions on behalf of their wards as provided by state law. Many of the questions, especially those having to do with whether the individual has been informed of his or her rights, should make clear that when the person has a legal guardian, the guardian must be informed.
There are terms used in the surveys, some that are not defined in the HCBS rule, that need to be clarified for individuals and providers in order to respond to the surveys. How does the state define “community” and “access”? What does it mean for an individual to have “access to the same set of community options as people who do not receive services through these waivers”? What is an “institutional treatment option”? What is considered a “secure environment”? There are many terms that may be familiar to professionals in government, but are not universally understood by families and providers.
Providers and individuals should also know that the HCBS rule does not require full implementation until March 2019. Even if a state finds a setting out of compliance with the rule, it can continue to use HCBS funding until that date.
Clarify “the right to disagree”. There is no mention of an appeals process for either individuals or providers who disagree with the findings of the state. This is a significant omission and should be included in a cover letter to those answering the surveys for them to have sufficient information about their right to disagree with the state assessments.
There should also be a reminder that the State Transition Plan allows time for remediation of non-compliant settings. This process will continue through September 2018.
Do not allow the state implementation of the the HCBS rule to eliminate the option of planned or intentional communities. Some of the most innovative and family-friendly projects in recent years, including intentional communities for housing people with disabilities, have been developed partly with the use of waiver funding. Because of the flexibility of the waiver funding and the ability to individualize services and choice, these projects offer a significant improvement in the quality of life for many individuals and their families. Unfortunately, some of these communities have been under attack by federally funded advocacy groups that use a misinterpretation of the HCBS rule and Olmstead to promote elimination of these options. The state has a responsibility to make sure this does not happen in Michigan.
We know these are not just numbers, but human beings who don’t have a permanent place to call home with some of them inhabiting places that “are unfit for human habitation”. The weather forecast for 2/14/15 predicts snow showers, a high of 23 degrees, and a low of -10 degrees. Something to think about as we celebrate Valentine’s Day.
A report in the Ann Arbor News, "By the numbers: A quick look at the Ann Arbor area's homeless population" by Ryan Stanton, 2/11/15/, shows the results of two surveys of the homeless population in Washtenaw County, Michigan. A snap-shot survey required by HUD (the U.S. Department of Housing and Urban Development) showed 387 people were homeless on January 28, 2015. The second survey is part of a national campaign to end veteran homelessness by the end of 2015 and chronic homelessness by 2016. It includes more data and shows larger numbers than the first survey.
Here are figures I selected from the HUD survey that show the number of homeless people according to their various vulnerabilities, including chronic health problems and mental illness:
- 307: The number of homeless people who were found in shelters or transitional housing on the day of the count.
- 80: The number of homeless people found on the streets or in other places not meant for human habitation, including camp sites.
- 24: The number of sheltered veterans; 5: The number of unsheltered veterans.
- 53: The number of sheltered people with a severe mental illness; 41: The number of unsheltered people with a severe mental illness.
- 23: The number of sheltered people with a chronic substance abuse problem; 21: The number of unsheltered people with a chronic substance abuse problem.
The Zero: 2016 surveys provide additional data on people with chronic health and mental illness and other vulnerabilities:
- 334: The total number of homeless people surveyed.
- 224: The number of homeless people who were identified as being particularly vulnerable; 20 percent reported being violently attacked since becoming homeless and 25 percent reported being homeless for more than two years.
- 350: The number of emergency room visits in the past six months among the people surveyed; 174: The number of hospitalizations in the past six months; 115: The number of ambulance transports to the hospital in the past six months; 49: The number of people who indicated they've had three or more ER visits in the past six months.
- 165: The number of people who reported chronic health conditions; 243: The number of people who reported mental health conditions; 176: The number of people who reported substance use issues.
- 88: The number of people who reported all three: mental health, substance use and chronic health conditions.
- 37: The percentage of chronically homeless people who reported all three: mental health, substance use and chronic health conditions.
Family advocates in Wisconsin spent months appealing to the state to continue to ensure choice and the availability of a full array of options for non-residential settings, including sheltered workshops. After the CMS issued its clarification of the new HCBS Rule on the subject, the Wisconsin Department of Health Services wrote a letter to the CMS with its decision to continue to assure a full array of available non-residential settings and choice.
The letter stated that,
"Sheltered workshops have provided services and resources to individuals and families for years. They provide assistance in developing work skills that help people move into employment across the state. We believe that sheltered workshops provide services that are vital to the individuals and families who depend on them and should remain part of Wisconsin’s robust efforts to help people with intellectual disabilities gain employment. We understand that it is an allowable choice for people to receive employment services in a sheltered workshop setting under Wisconsin’s approved waivers.
"We have now reviewed the home and community-based non-residential settings guidance that CMS issued on December 15, 2014. Based on this new guidance, which continues to emphasize individual rights and choices, Wisconsin will continue to offer our most vulnerable residents a choice of settings for employment (both competitive and non-competitive) and day services. As CMS has indicated, the setting chosen by the person may depend on whether he/she requires services that are highly clinical or medical in nature or he/she has competitive employment goals."
This shows what is possible under the new rule and that it does not necessarily portend the closing of all congregate (group) settings, as many advocacy organizations pushing for closure would have us believe.
The federal Centers for Medicare and Medicaid Services (CMS) issued a set of “Exploratory Questions to Assist States in Assessment of Non-Residential Home and Community-Based Service (HCBS) Settings". These are similar to the Exploratory Questions for Residential Settings also issued by the CMS. These questions apply to programs such as sheltered (center-based) work programs, day habilitation programs, pre-vocational programs, etc.
According to the document, its purpose "...is to offer considerations for states as they assess whether non-residential settings meet the Medicaid HCB settings requirements. The optional questions for non-residential settings are organized by each HCB setting regulation requirement… These questions serve as suggestions to assist states and stakeholders in understanding what indicators might reflect the presence or absence of each quality in a setting. These questions are not designed to be a score sheet and not all questions relate to every HCBS or every individual served….”
It goes on to say that, “In some cases, especially when the service provided is highly clinical/medical in nature, e.g., medical adult day programs, the nature of the service will impact how the state addresses the HCB settings requirements. The state’s determinations about these settings and the extent to which changes in the settings are necessary to comply with the requirements may be different than state decisions/actions for a setting that is less medical/clinical in nature.
“States should consider carefully the extent to which settings compliance is met due to the nature of the service and/or the HCB qualities. For example, for individuals seeking supports for competitive employment, the state should consider whether the right service is being appropriately provided to achieve its goal...or whether the provision of a different type of service would more fully achieve competitive employment in an integrated setting for the individual, in addition to whether the setting meets the HCB settings requirements. Or, in another example, a service that is primarily rehabilitative (offers physical, speech, occupational and other therapies), but also offers respite to family caregivers, may be short-term in duration and requires by definition that all participants have a disability. Another type of service may be designed to primarily offer personal care, social recreational supports and respite for family caregivers, and is more long-term in duration. The manner in which each of these services meets the HCB settings requirements may vary.“ [emphasis added]
There are no “right” answers to the questions and no specific characteristics of a non-residential setting that automatically disqualifies a setting from being considered appropriate for an individual with a developmental or other disability. It is useful to read through the questions - they may alert you to possibilities that you had not considered before. For instance, the questions concerning “an individual’s rights of privacy, dignity, and respect, and freedom from coercion and restraint. 42 CFR 441.301(c)(4)(iii)/ 441.710(a)(1)(iii)/441.530(a)(1)(iii)...", would apply to any setting and offer an opportunity to correct deficiencies in this area, wherever the individual receives services.
The problem with the HCB settings rule is that it does not emphasize or restate part of the Americans with Disabilities Act referring to individual need. The ADA and its regulations require these three things that are especially relevant to determining where a person lives or receives services:
- No qualified individual with a disability shall, on the basis of disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any public entity.
- A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.
- Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept.
The HCB settings rule and its varying interpretations do not change the requirements of the ADA.
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The Community Choice Coalition has information on State Transition Plans and what you can do to assure choice and that states maintain a full array of residential and service options.
This website has links to documents on the final HCBS Rule and clarifications from CMS.
The Centers for Medicare and Medicaid Services (CMS) provided states with “Guidance on Settings that have the Effect of Isolating individuals receiving HCBS from the Broader Community.” "Farmsteads or disability-specific farm communities" are among the settings listed that may no longer qualify to receive Medicaid funding for Home and Community-Based Services (HCBS) under the new HCBS settings rule.
Many family groups have initiated projects to create planned communities, including "farmsteads or disability-specific farm communities", as a response to the poor quality and general lack of availability of residential options for people with disabilities. These communities have now been singled out for isolating people from the broader community:
From page two of "Guidance..."
"...Farmstead or
disability-specific farm community: These settings are often in rural
areas on large parcels of land, with little ability to access the
broader community outside the farm. Individuals who live at the farm
typically interact primarily with people with disabilities and/or
staff…[a number of assumptions about the lack of integration with the broader community follows.]…Thus, the setting does not
facilitate individuals integrating into the greater community and has
characteristics that isolate individuals receiving Medicaid HCBS from
individuals not receiving Medicaid HCBS.” The assumptions about isolation are hotly disputed by people who live and participate in these programs and their families.
In a letter dated 1/26/15, to Sylvia Burwell, the Secretary of the U.S. Department of Human Services, Ohio legislators have pushed back on the idea that these settings are isolating and should not receive HCBS funding:
“…Ohio is home to several farmstead programs, which provide vocational and educational programs, and residential support for people with autism. We have heard from constituents across Ohio that these farmstead programs are a very successful environment for a large percentage of the autism community. It is our understanding that while individuals spend a good deal of time in the farmstead environment, they are exposed regularly to the outside community for a variety of activities. Overall, the farmstead setting provides unique support for individuals with autism enable them to maximize their potential.
“We have concerns that this rule could inhibit the availability of these types of services for individuals who benefit from them. Many of these participants have been attending and participating in these services for years. We urge you to reconsider this guidance so that the option for individuals to live and work in a rural, farmstead or disability-specific farm community remains a choice for individuals and remove them from the list of having an isolating effect.”
The letter is signed by one U.S. Senator and 13 members of the House of Representatives from Ohio, including John Boehner, the Speaker of the House.
For more information on choice in community settings see the Coalition for Community Choice website and the CCC Blog - "Advancing the principle that community can be experienced in all residential settings".
This is from the Michigan Department of Community Health (MDCH). Read the documents available on the website and comment. See also the CMS clarification of the HCBS settings rule :
Stakeholder Review of Assessment Tools for the Home and Community-Based Services Program Transition Project
As many of you are already aware, the Centers for Medicare and Medicaid Services released a new rule in 2014 for home and community-based services waivers. The new rule affects 1915 (c) waiver programs. The Department has since developed a statewide transition plan to bring its waiver programs into compliance with the new rule.
As part of the transition process, the Department must determine whether settings under these waivers have “home and community-based” characteristics. For this purpose, the Department developed a set of surveys to assess individual settings for home and community-based characteristics.
The Department has posted the draft assessment tools and associated documents at this website.
The Department will accept feedback and comments on the survey tools until February 20, 2015.
Feedback and comments can be submitted by e-mail to:
HCBSTransition@michigan.gov or by mail at:
HCBS Program Transition Team
Capitol View Building, 7th Floor
201 Townsend Street
Lansing, MI 48913
The Department will also be developing a scoring system for the assessment at a later date to determine the level of compliance of each setting with the rule.
Additional information about the project and statewide transition plan are available on the Department’s website.
Thank you for your continued interest and support in this process.
Regards,
Home and Community-Based Services Program Transition Team
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More from the MDCH website:
Assessment Tools
As part of the transition process, the Department must determine whether settings under these waivers have “home and community-based” characteristics. For this purpose, the Department developed a set of surveys to assess individual settings for home and community-based characteristics....
[See above for where to send comments.]
...Stakeholders should read the “Assessment Tool Cover Letter” and “Home and Community-Based Services Program Transition Frequently Asked Questions” before reviewing the assessment tools.
Cover Letter
Provider Tool
Participant Tool
Prepaid Inpatient Health Plan Tool
