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.
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