Here is Part I of my comments to the Michigan Department of Health and Human Services on the revised State Transition Plan on Home and Community-Based Services.
For more information with links to relevant documents, see the notice from the MI DHHS.
Here is helpful information from the Coalition for Community Choice: Guidance for States Implementing the 2014 Home and Community-Based Services Rule
My general recommendation is that the State interpret the federal Home and Community-Based Services (HCBS) rule in a way that respects the individual differences and preferences of the people receiving waiver services.
Michigan’s Revised STP for Home and Community-based Services (HCBS)
Michigan submitted a Transition Plan to CMS, who sent it back to the State with requests for changes. CMS wanted the State to correct what appear to be technical problems with ensuring consistency among all of the state Medicaid Waivers, to clarify procedures the state would follow in implementing the plan, and to fill in parts of the plan that seemed vague or were missing some steps needed for completion. The revisions seem to take care of most of the demands from CMS.
Larger questions remain, however, in how the state will interpret the federal HCBS rule:
1. Possible use of the HCBS rule by the state and local Community Mental Health agencies to coerce people with disabilities and their families to accept inadequate settings that they would otherwise reject for the purpose of lowering costs for the funding agency
According to the rule, the State may ultimately remove an individual from a Medicaid waiver program, if a setting has been found non-compliant with the subjective criteria that define “community-based”, and the person with a disability disagrees and wishes to continue receiving services in that setting. This sets up a situation where the state could coerce individuals and their families to accept inadequate and less costly services and living situations that the families and individuals would otherwise reject. In most cases, the only alternative for them will be to go without help and the funding to pay for care and other services.
2. Lack of appeals procedures for people with disabilities to challenge compliance decisions for specific settings; determination of compliance for a particular setting does not require those assessing a setting to consider the Person-Centered Plan (PCP) for each individual affected by a compliance determination in addition to other factors.
In the State Transition Plan, the determination of compliance with the settings rule does not preclude the use of information from individual PCPs, but it also does not require consideration of PCPs in determining compliance. The PCP is the best source of information to understand the appropriateness of the setting for the individuals with disabilities affected. In the transition plan there is no appeal available to an individual who disagrees with a decision that a particular setting or service does not comply with the HCBS rule.
The only appeal mentioned in the transition plan comes after the setting has already been determined to be non-compliant with the HCBS rule and the individual can only appeal removal from a waiver program. It is possible — even likely — that organizations and individuals hired to make assessments regarding group settings and other supervised care will reach conclusions with which people with disabilities do not agree. The State Transition Plan appears to have no way for individuals to challenge the findings of assessments for compliance.
3. Opinions of third-party “stakeholders” could override the right of people with disabilities to services and settings that that they need and prefer as expressed in the PCP and Individual Plan of Service (IPOS).
A second and related problem is that the federal HCBS rule encourages “stakeholders” to participate in assessments of individual settings. These stakeholders are not necessarily personally affected by the HCBS rule, but they are urged to identify settings that they believe to comply or not comply with the rule. Many advocacy organizations, which are considered stakeholders in this process, are ideologically opposed to housing or service settings where more than 3 or 4 people with disabilities choose to receive services or live together. Not everyone agrees with this ideology nor has it been proven to work for everyone with a disability. These settings usually serve people with complex and severe disabilities who require more care and supervision for their survival and enjoyment of life.
People who receive waiver services and their families could very well be outnumbered by "stakeholders" who are not personally affected by the assessment of a setting, but whose primary concern is in promoting an agenda that furthers their ideology. At what point could the opinions of such "stakeholders" deny an individual’s right to make choices and participate in determining the services and settings that he or she needs and prefers?
4. Monitoring for compliance with subjective criteria for “full integration into the community” could be coercive and intrusive, pressuring people with disabilities and their families to accept services that they would otherwise reject.
Depending on the state’s interpretation of the HCBS rule, it is possible that the monitoring to ensure “full integration into the community” could become intrusive. The assessment of settings depends on subjective criteria for how integrated the setting is in the community and how often and to what extent the person with a disability spends time in proximity to people without disabilities. Monitoring what people do and who they associate with is not only intrusive, but the subjective criteria to decide that a setting lacks full integration into the community could become an easy excuse to remove individuals from waiver programs as a cost-savings measure.
5. The survey tools used to assess settings are not always relevant for people who have severe physical, intellectual, or behavioral disabilities.
The Participant Survey for Residential Settings includes questions about accessibility where the answers may reflect more on the degree of disability of the person than on the qualities of the setting that is being evaluated. For people like my sons, for instance, the survey asks,
• Do you have full access to the home’s spaces?
• Can you choose to come and go from your home when you want?
• Can you move inside and outside your home when you want?
The answer to these questions for my sons is “no”, but that would be the case no matter where they lived. With their severe physical and intellectual disabilities, even if they could choose to do so, they are prevented from having full access to their environment. There should be some recognition that many disabilities really do make life harder for people and that affects their access to everything that the rest of us take for granted. The setting may make it easier to compensate for that, but it can’t change the reality of the situation.
Recommendation 1: To protect against potential abuses of the federal HCBS rule, the individual’s Person-Centered Plan and the resulting plan of service should be used as part of the assessment of settings for compliance with the rule:
According to Questions and Answers from CMS on the Final Rule:
Q 13. What is person-centered planning and why is it important?
A: Person-centered planning is a process whereby the needs and preferences of the individual receiving services are described by that person, in collaboration with family, friends and other care team members, to develop a plan of care [the PCP] that provides that individuals receive the covered services they need in a manner they prefer. The expectations set forth in this final rule emphasize that individuals are most knowledgeable about their services needs and the optimal manner in which services are delivered. These requirements apply across the 1915(c) and 1915(i) programs and are consistent with the final person-centered planning requirements for 1915(k). [emphasis added]
The Person-centered planning process is the only process that assures that the disabled person has a right to participate in determining his or her needs and preferences. The PCP and the resulting service plan are the only documents that must include the needs and preferences of the individual, the services that will be provided, and any modifications to the HCBS rule to protect the health and safety of the person. The PCP and service plan are the only written statements that the individual may challenge through appeals procedures if he or she does not agree with the results. The PCP process is also the only process available that assures participation by a representative of the individual, either chosen by the person or appointed by a court in the case of guardianship. In short, the PCP should be given primary consideration in determining compliance with the HCBS settings rule along with other information.
By requiring consideration of the PCP and the service plan in the assessment process for compliance of settings and services with the HCBS rule, it is far less likely that the HCBS rule could be used as a means to coerce individuals and their families into accepting services and settings that they would otherwise reject.
The opinions of third-party advocates and others commenting on the compliance process would be put into perspective and could not effectively overrule the PCP and service plan for the individuals affected. The PCP should be central to determining the qualities of a setting for the individuals served as it is one of the central principles behind the HCBS rule: that individuals and the people they choose to help them are “…the most knowledgeable about their services needs and the optimal manner in which services are delivered.“
Recommendation 2: Appeals procedures for individuals to challenge compliance decisions and assessment results should be included in the state policies and the State Transition Plan.
Recommendation 3: Reevaluate the assessment tools to make sure they are evaluating the qualities of the setting and its appropriateness for the individuals involved and not assessing the severity of the disability.
Additional Comments with Questions and Recommendations on the Michigan STP
Page 3: “Assessment Results: As individual settings are assessed for compliance under each waiver program, MDHHS will post the aggregated results for each waiver on the project website and also incorporate the results into the STP.”
Make assessment of individual settings readily available for review separate from the postings of aggregated results.
Page 16 for the MI Choice Waiver : “Compile, analyze, and review assessment data and report findings to stakeholders” (the same recommendation applies to the assessment results for the HSW waiver on page 19.)
What is the process to dispute results that might be influenced by the viewpoints of reviewers for any data collection that is subjective in nature?
Page 22, row 23: “MDHHS will develop and adopt revised policies, procedures, standards, and contracts to address ongoing compliance and monitoring.”
When will stakeholders be advised and have an opportunity to comment on any proposed revisions to policies, procedures, standards and contracts, and any proposed legislation, administrative rules and contracting procedures prior to their advancement?
Page 29, row 32.3: “if after initial assessment of any settings are found to be not in compliance…participants will be given the option to either transition to a new setting within their service area or disenroll from the waiver program.”
What happens to the waiver participant if no appropriate compliant setting is available in the timeframe? Could the participant be forced into a compliant setting that is inappropriate to the participant’s needs and desires? Who decides that? How is this documented in the person-centered plan?