The federal Public Health Emergency for COVID-19 expires on May 11, 2023. Here's what happens next...

The following is from a CMS  fact sheet: "CMS Waivers, Flexibilities, and the Transition Forward from the COVID-19 Public Health Emergency", Feb 27, 2023. It covers changes to CMS requirements for Medicare, Medicaid, private health insurance, and other entities that are in effect during the COVID pandemic and will be lifted on May 11, 2023. [CMS is the federal Centers for Medicare and Medicaid Services, the federal agency that regulates Medicare and Medicaid.]

Some of the federal requirements will change, but that does not mean COVID is going away anytime soon. Pay attention to COVID conditions in your state. Currently nationwide, 652 people a day are dying from COVID-19. For Michigan, all but two counties are considered to be "Low Risk" for the virus. One good source of information is the COVID Dashboard at BridgeMichigan.com.

These excerpts refer to Medicare and Medicaid requirements and waivers that gave flexibility in administering federally-funded programs. See the Fact sheet for a more complete picture of all that will be affected by the expiration of the Public Health Emergency. (Most adults with developmental disabilities qualify for Medicaid based on their low income and disability. Many adults also qualify for Medicare when a parent retires or dies or when the disabled adult retires from employment.)

Excerpts from the FACT SHEET:

"The emergency declarations, legislative actions by Congress, and regulatory actions across government, including by the Centers for Medicare & Medicaid Services (CMS), allowed for changes to many aspects of health care delivery during the COVID-19 PHE. Health care providers received maximum flexibility to streamline delivery and allow access to care during the PHE [Public Health Emergency]. While some of these changes will be permanent or extended due to Congressional action, some waivers and flexibilities will expire, as they were intended to respond to the rapidly evolving pandemic, not to permanently replace standing rules."

"...For more information on what changes and does not change across the Department, visit https://www.hhs.gov/about/news/2023/02/09/fact-sheet-covid-19-public-health-emergency-transition-roadmap.html "

Medicare

"Vaccines: People with Medicare coverage will continue to have access to COVID-19 vaccinations without cost sharing after the end of the PHE.

"Testing: Additionally, people with traditional Medicare can continue to receive COVID-19 PCR and antigen tests with no cost sharing when the test is ordered by a physician [or other healthcare professional]..

"Treatments: There is no change in Medicare coverage of treatments for those exposed to COVID-19 once the PHE ends, and in cases where cost sharing and deductibles apply now, they will continue to apply. Generally, the end of the COVID-19 PHE does not change access to oral antivirals, such as Paxlovid and Lagevrio."

Medicaid and CHIP(Children's Health Insurance)

"Vaccines, Testing, and Treatment: As a result of the American Rescue Plan Act of 2021 (ARPA), states must provide Medicaid and CHIP coverage without cost sharing for COVID-19 vaccinations, testing, and treatments through the last day of the first calendar quarter that begins one year after the last day of the COVID-19 PHE. If the COVID-19 PHE ends as expected on May 11, 2023, this coverage requirement will end on September 30, 2024.

"After that date, many Medicaid and CHIP enrollees will continue to have coverage for COVID-19 vaccinations. After the ARPA coverage requirements expire, Medicaid and CHIP coverage of COVID-19 treatments and testing may vary by state.

"Additionally, 18 states and U.S. territories have opted to provide Medicaid coverage to uninsured individuals for COVID-19 vaccinations, testing, and treatment. Under federal law, Medicaid coverage of COVID-19 vaccinations, testing, and treatment for this group will end when the PHE ends."

Private Health Insurance [See the Fact Sheet for details]

Access to Telehealth Services

...“'Telehealth' includes services provided through telecommunications systems (for example, computers and phones) and allows health care providers to give care to patients remotely in place of an in-person office visit."

"The Consolidated Appropriations Act, 2023, extended many telehealth flexibilities through December 31, 2024, such as:
    •    People with Medicare can access telehealth services in any geographic area in the United States, rather than only those in rural areas.
    •    People with Medicare can stay in their homes for telehealth visits that Medicare pays for rather than traveling to a health care facility.
    •    Certain telehealth visits can be delivered audio-only (such as a telephone) if someone is unable to use both audio and video, such as a smartphone or computer."

Medicaid, CHIP, and Telehealth
 
"For Medicaid and CHIP, telehealth flexibilities are not tied to the end of the PHE and have been offered by many state Medicaid programs long before the pandemic. Coverage will ultimately vary by state. CMS encourages states to continue to cover Medicaid and CHIP services when they are delivered via telehealth."

COVID-19 Waivers and Administrative Flexibilities: How Health Care Providers and Suppliers are Affected [See the Fact Sheet] This includes Hospital at Home, Nurse Aide Training for Nursing Homes, Virtual Supervision, Scope of Practice, and Health and Safety Requirements, 

Medicaid Continuous Enrollment Condition

"The continuous enrollment condition for individuals enrolled in Medicaid is no longer linked to the end of the PHE. Under the Families First Coronavirus Response Act, states claiming a temporary 6.2 percentage point increase in the Federal Medical Assistance Percentage (FMAP) have been unable to terminate enrollment for most individuals enrolled in Medicaid as of March 18, 2020, as a condition of receiving the temporary FMAP increase." [FMAP means the Federal Medical Assistance Percentages (FMAPs) that are used in determining the amount of Federal matching funds for State expenditures for assistance payments.]

"As part of the Consolidated Appropriations Act, 2023, the continuous enrollment condition will end on March 31, 2023. The temporary FMAP increase will be gradually reduced and phased down beginning April 1, 2023 (and will end on December 31, 2023). For more information, visit Medicaid.gov/unwinding."

From the Kaiser Family Foundation (KFF)

"At the start of the pandemic, Congress enacted the Families First Coronavirus Response Act (FFCRA), which included a requirement that Medicaid programs keep people continuously enrolled through the end of the month in which the COVID-19 public health emergency (PHE) ends, in exchange for enhanced federal funding.Feb 22, 2023"

 

See also, "10 Things to Know About the Unwinding of the Medicaid Continuous Enrollment Provision" by Jennifer Tolbert and Meghana Ammula, Feb 22, 2023

CMS request for comments: VOR responds Part 1

In November 2016, the Centers for Medicare and Medicaid Services (CMS) issued a “Request for Information” (RIN 0938-ZB33) to inform the agency’s future decision-making with regard to: accelerating access to Home and Community Based Services (HCBS); ensuring the quality of HCBS including beneficiary health and safety; safeguards to ensure safety and reduce fraud, waste and abuse in the HCBS program; and strengthening the HCBS home care workforce.” 

CMS is the federal agency that regulates Medicaid, including Home and Community-Based Services (HCBS) that are provided through Medicaid Waivers or through State Plans. Comments in response to the Request for Information were due on January 9th, 2017.

This is the full response to CMS from VOR to the request for comments. I participated in writing the VOR response as part of a VOR committee. [JRB] Below is part 1 of the response:

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VOR is a national non-profit advocacy organization representing individuals with intellectual and developmental disabilities (I/DD) and their families. We support a continuum of quality care options to meet the diverse needs of people with I/DD. This includes residential options in the family home, the individual’s own home, licensed group homes, disability farms, intentional communities, and Medicaid-licensed "congregate" [setting in which more than 3 people with disabilities live or receive services] care facilities (i.e., ICF’s/IID). We also supports the full array of employment options – competitive employment, sheltered workshops and facility-based day programs.

...We are the only national organization that represents the interests of individuals who choose and require facility-based residential supports. Federal law, including Medicaid, the Americans with Disabilities Act and the 1999 U.S. Supreme Court Olmstead decision require the provision of a range of service options responsive to all levels of need...

...We also support a service system driven by the choices of individuals with I/DD with the aid, when necessary, of their parents and guardian. A person centered planning process guided by these primary decision-makers ensures the formation of individualized plans of service which identify and address the unique needs and desires of the vulnerable persons served through the selection of appropriate supports from a full continuum of care. Such a system honors Olmstead, which makes individual choice paramount and emphasizes the need for a wide range of services.

Before answering the questions put forth in the CMS Request for Information, VOR has concerns about CMS policies, including the 2014 HCBS Settings rule. Changes to the rule should be considered to remove barriers to a cost-effective system of care for people at all levels of disability:

1. HCBS policies as now written are being used to enforce an incorrect and harmful misunderstanding of the Americans with Disabilities Act as interpreted by the 1999 Supreme Court Olmstead decision:

Many, if not most, federal agencies and federally-funded advocacy groups serving people with I/DD, incorrectly interpret Olmstead and the ADA to require deinstitutionalization and HCBS settings, regardless of individual need and choice. The 2014 HCBS rule encourages this interpretation by disqualifying certain settings from receiving HCBS funding unless they have undergone “heightened scrutiny”, a process that ultimately leaves the determination of whether a setting is “community enough” up to CMS, rather than the individual with I/DD, and when necessary, their parents and guardian.

The bias against any kind of congregate residential setting where more than 3 or 4 people with disabilities are served together is clear from the restrictions placed on even the contemplation of future planned communities and congregate settings. The same holds true for facility-based occupational settings and the increasing restrictions placed on them. Such settings offer features to ensure the safety and health of residents while providing a community in which individuals with I/DD can reach their full potential and maximize their independence. This bias is particularly destructive as it directly attacks the right of individuals with I/DD to freedom of assembly, a fundamental American right.

The ADA and Olmstead assure opportunities for people with I/DD, but they do not dictate one-size-fits-all solutions. Individual choice among the widest possible range of quality living and occupational options is what is necessary to realize the goals of the ADA and Olmstead. VOR supports the full reading of Olmstead, making individual choice of services paramount and ensuring a full range of living and work options in order to meet the spectrum of needs of this very diverse population.

See also from VOR, "The Olmstead Decision Has Been Misinterpreted" and Celebrating The 17th Anniversary of the Olmstead Decision: Opportunities and Choices

2. The HCBS rule makes presumptions about the abilities of people with IDD to live independently, work, and participate in the community that do not apply to many individuals with I/DD, especially those with the most complex, severe, or profound disabilities. These can lead to inappropriate services and residential options being imposed on individuals and their families that are unwanted and ignore individual needs for special accommodations to ensure the health and safety of the person with I/DD.

In the Request for Information, CMS cites the ADA, as saying that “the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals”. CMS needs to clarify that this goal is not a requirement imposed on individuals with disabilities. In fact there are numerous protections in the ADA, Olmstead, and Medicaid law that assure appropriate services based on individual need and preference. The integration mandate from the ADA regulations states 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]

Making presumptions about an individual’s abilities and setting unrealistic goals which do not recognize their disabilities is dangerous, dehumanizing policy. If we as a society are to honor the full reading of Olmstead, we must first be willing to honor the individual with I/DD by recognizing and accepting who they are – abilities, disabilities and all. Doing so is the first step in providing a quality disability service system that protects health and safety.

3. CMS should lift its prohibition on using HCBS funding to pay for services that are available in Medicaid-licensed facilities, such as Intermediate Care Facilities (ICF’s/IID), or in proximity to these facilities. These facilities have many resources that are often desperately needed by people living in community settings: specialized medical, behavioral, and dental services, recreation, social activities, and respite care, to name a few. To arbitrarily cut off HCBS funding to individuals living in community settings who wish to avail themselves of these resources, squanders resources that could give valuable support to individuals living in the community.

We believe strongly that proximity to a facility with its services, peers with disabilities, and amenities, at best enhances community qualities and should not disqualify individuals living in HCBS settings from voluntarily utilizing the resources available in ICF’s/IID. Often, the nature of the services provided by the ICF/IID are specifically tailored to the needs of individuals with I/DD, and the individuals performing those services are more familiar with the needs and sensibilities of this unique population.

Therefore, CMS regulations that prohibit the provision of HCBS residential and work settings on or adjacent to ICF/IID campuses are harmful in terms of limiting opportunities and marginalizing vulnerable people. Segregating people with lower levels of disability from people with higher levels of disability has the effect of stigmatizing and marginalizing the individuals who choose and rely upon ICF’s/IID care. CMS disparages ICF/IID settings by labeling them “isolating” or “segregating” from the larger community. The residents and their families view their homes as communities designed to address their needs and provide them with a combination of opportunities and services not available anywhere else. CMS should embrace ICF’s/IID as an important part of a continuum of care.

4. CMS needs to assess the true cost of implementing the 2014 HCBS rule. Complying with the rule is proving costly for the states, resulting in states cutting services and displacing vulnerable individuals from their homes. The closing of congregate settings to comply with the new rule and so-called Olmstead enforcement activities have further harmed disability service systems in states by increasing wait lists and forcing people into inappropriate settings they did not choose, settings that are often unprepared to ensure their health and safety. The whole system of care is being undermined in the name of inclusion, integration and Olmstead enforcement, contrary to the plain language and intent of Olmstead as a vehicle for choice.

The expectation of savings from moving individuals from congregate care (ICF’s/IID) to smaller licensed group homes, or from small group homes to unlicensed community settings, is unlikely to be realized unless there is also a reduction in the quality or quantity of services needed by individuals with I/DD. These expectations are often based on faulty cost comparisons, which fail to account for the full array of public benefits accessed by individuals receiving HCBS care. Unsustainable costs have resulted in even longer waiting lists and tragic outcomes. [See VOR’s “Widespread Abuse, Neglect and Death"  in Small Settings Serving People with Intellectual Disabilities”, 2016 ]

Often, the increase in HCBS comes at the expense of ICF/IID residents who lose their homes due to federally funded litigation. Happily situated ICF residents pressured or forced to leave ICFs through litigation receive HCBS placements ahead of individuals who have been waitlisted for years. The policy of shutting down successful residential placements is even more absurd when you consider many of the wait-listed individuals may in fact prefer and can benefit from HCBS settings. These individuals are forced to wait longer now that former ICF/IID residents move to the front of the line.

The Case for Inclusion annual reports produced by UCP on how well state Medicaid programs serve people with I/DD, shows that with the increase in the use of Home and Community Based Services over the last decade, waiting lists for residential and other services have increased from 74,000 in 2005 to 350,000 in 2016, an increase of nearly 400%. At the very least, it can be said that increased use of HCBS has not resulted in fewer people waiting for services.

5. CMS policies as well as federally-funded advocacy organizations portray congregate settings as isolating and segregating, a “last resort” on the continuum of care and services. Whether these settings are technically “institutions” as defined by Medicaid law, the individuals and families who rely on this level and type of care do not view them as “institutions” in the disparaging way the term is usually used. 

Facilities such as ICF’s/IID, and other licensed and regulated group settings, and innovative intentional communities for people with I/DD provide lifesaving care in an environment that enhances the individual’s access to family, friends, and the greater community, just as small, unlicensed supported living situations can isolate and segregate individuals in settings that jeopardize the individual’s safety, health, and peace of mind. [For example, please see the 2012 report from Disability Rights Washington and Columbia Legal Services, “Too Little, Too Late: A Call to End Tolerance of Abuse and Neglect”, an investigation of abuse and neglect in the Medicaid-funded Supported Living Program.] Also, the 7th Circuit Court of Appeals found that, "Isolation in a home can just as 'severely diminish the everyday life activities' of people with disabilities. (Olmstead, 527 U.S. at 601) “In fact, although family relations might be enhanced at home if people are around, isolation in a home may often be worse than confinement to an institution on every other measure of ‘life activities’ that Olmstead recognized." (Steimel and Maertz, et al., v. Wernert)

See also VOR’s “Giving a Voice to Families and Guardians - A Survey of Families and Guardians of Individuals with Intellectual and Developmental Disabilities In Various Residential Settings”, April 2015. 

As Sister Rosemary Connelly, the director of Misericordia, so wisely puts it: "Big can be bad. Small can be bad. Both can be good." Misericordia is a “community of care” in Chicago that serves over 600 people with mild to profound I/DD through a spectrum of residential options and services.

Comments on Michigan State Transition Plan : Part II

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.

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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?

Comments on MI State Transition Plan for HCBS : Part I

Comments on Michigan's revised State Transition Plan for Home and Community-Based Service (HCBS) are due on 1/22/2016. 

For more information, including links to relevant documents, see the notice from the MI Department of Health and Human Services. 

Here is helpful information from the Coalition for Community Choice: Guidance for States Implementing the 2014 Home and Community-Based Services Rule

This is the first part of my comments submitted to the Michigan DHHS:

I have two adult sons with profound intellectual and developmental disabilities who receive services funded by Michigan’s Habilitation Supports Waiver for people with developmental disabilities. They live in a group home with four other people with similar disabilities. They attend an activity program run by a non-profit organization for people with moderate to severe disabilities, which is paid for privately and not with HCBS Waiver funds.

My older son has lived in his group home for more than 18 years. Although the quality of care has varied, the problems we have encountered are not inherent to the group home structure. They are more often related to poor pay for the staff with, at times, high staff turnover, a lack of incentives to retain competent and committed direct service workers, and other external pressures associated with funding that affects the Community Mental Health system as a whole.

I have seen many improvements in the group home over the last ten years. The home is managed well and the staff does a good job of taking care of people with complex medical needs who are also non-verbal and severely intellectually disabled. My sons have transportation available to them to get to their activity program and all medical appointments and other activities that my husband and I, as their legal guardians, would like them to participate in. The group home does not impose a rigid schedule on residents for the convenience of staff. Staff members, however, follow a flexible schedule to provide daily care for our sons for such things as bathing, other personal care, medications, and feeding, including tube-feeding for my older son. 

Most important to my husband and me is the extent to which the group home and staff are supervised and monitored. Supervision and monitoring does not usually occur to the same extent in unlicensed settings that some would consider more integrated into the community. A setting such as an apartment in subsidized housing would impose extra burdens on our sons by removing them from a safe and accepting environment appropriate to their needs and reduce their opportunities for meaningful interactions with other people. It is doubtful that such a move would save money, as both of my sons would still require the same services, but would also need a one-to-one staff ratio 24/7 just to ensure their safety and to provide basic care.

My sons are well taken care of and happy with their current circumstances. We see them several times a week and monitor their care to make sure they are getting what they need.

My sons are part of a community of family, friends, and caregivers who accept them for who they are and who are respectful of their needs. In instances where my sons have not been treated well or caregivers were found to be less than competent, my husband and I, as their guardians, have always taken all measures available to us to correct problems quickly and to assure that their rights are respected.

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.

Will the state implement the rule with enough flexibility to avoid imposing changes on disabled people and their families that are unwanted or conflict with the safety, welfare, and medical needs of the individual? To what degree will people with disabilities and their families continue to be the primary decision makers as described in the federal Development Disabilities Assistance and Bill of Rights Act:  “individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.” [from The DD Act, policy #3]?

Michigan : Dept. of Health and Human Services seeks approval for combining Medicaid Waivers under a new 1115 Demonstration Waiver

Below is an email from the MI Dept. of Health and Human Services. I added links that were not in the original email, but the gist of the notice is the same. I do not know much about the proposal to combine several of Michigan's Medicaid Waivers under  a 1115 Demonstration Waiver, but here is where you can find out more :

The Michigan Department of Health and Human Services (MDHHS) is seeking approval from the Centers for Medicare and Medicaid Services (CMS) for a 1115 Demonstration Waiver to combine under a single waiver authority for all services and eligible populations served through its 1915(b) and its multiple 1915(c) waivers for persons with Serious Mental Illness (SMI), Substance Use Disorders (SUD), Intellectual & Developmental Disabilities (IDD) and Children with Serious Emotional Disturbances (SED).

Under this consolidated waiver authority, Michigan is seeking broad flexibility to develop quality, financing and integrated care (physical and behavioral health care) initiatives for all Specialty Service Populations on a statewide basis. Two public hearings have been scheduled for the following dates and times:

January 13, 2016, 1:00-2:30 p.m. Webinar:  https://connectpro148710=
85.adobeconnect.com/dualel/
U.S. Toll-Free Access Number: 877-366-0711 Participant Passcode: 39535358
 
January 28, 2016, Lansing Center, 10:00-11:30 a.m.
333 Michigan Avenue
Lansing MI 48933

Below is the link to the Section 1115 Demonstration Waiver :Stakeholder Letter on the new 1115 Waiver Proposal 

Pathway to Integration, Section 1115 Waiver Summary

Pathway to Integration, Michigan’s 1115 Waiver Proposal to the Centers for Medicare and Medicaid Services for Persons with Severe Mental Illness, Substance Use Disorders, Intellectual and Developmental Disabilities and Children with Severe Emotional Disturbances
 
Teri Baker, Executive Secretary
Division of Program Development, Consultation and Contracts
Bureau of Community Based Services
Lewis Cass Building, 5th Floor
320 South Walnut, Lansing, MI 48913
Phone (517) 241-5066
Fax (517) 335-5376
[MDHHS logo (2)]

Here is the MDHHS Website on the 1115 Waiver

The Revolving Door : Former Head of CMS Becomes Top Lobbyist for Health Insurers

According to an article in The Hill, "Former ObamaCare official becomes top lobbyist for insurers" by Sarah Ferris, 7/15/15,  the former head of the Centers for Medicare and Medicaid Services (CMS), Marilyn Tavenner, has become the president and CEO of America's Health Insurance Plans (AHIP). AHIP is a lobbying group for the Health Insurance industry. 

Tavenner announced in January 2015 that she would be leaving CMS.

CMS is the agency under the U.S. Department of Health and Human Services that regulates Medicare and Medicaid. In my rudimentary knowledge of insurance regulation, it appears  the insurance industry is mostly regulated by the states, but the regulation of Medicare and Medicaid under the Affordable Care Act has had a large impact on the industry. Tavenner's appointment should be a great advantage to the health insurance business. 

CMS is also the agency that issued the rule on Home and Community-Based settings in January 2014.

This happens all the time in Washington, D.C., so it is no surprise that Tavenner switched sides from regulator to the regulated relatively quickly. That this is perfectly legal and accepted within Washington, does not make it any less questionable to the rest of the country. Who are the people making up the rules? Are they working for us or are they angling for their next job? Maybe a little of both?

The Department of Health and Human Services announced last week that it was appointing Andy Slavitt, who currently serves as acting administrator, to assume Tavenner’s former post.

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.

CMS: New HCBS Rule...but NOT Immediate changes!

An Update from the CMS:

January 9, 2015
New Year Brings New HCBS Settings Rules ... but NOT immediate changes in services!

As states and stakeholders across the country assess their Medicaid-funded home and community-based settings for compliance with the 2014 regulations, many people with disabilities and their families have asked whether their current services will change immediately, due to the regulation.

In other words, they want to know:
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?

The answer is NO.
 
If a state determines that HCBS are currently being provided in settings that do not provide opportunities for participants to seek employment and work in competitive settings, engage in community life, control personal resources, and access the community to the same degree of access as individuals not receiving Medicaid HCBS, or if individuals receiving HCBS are not residing in settings that meet the HCB settings requirements, 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 for federal matching funds for these services during the transition period.

For more information about the Medicaid HCBS regulation, including a settings requirements toolkit, please visit: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Home-and-Community-Based-Services/Home-and-Community-Based-Services.html

Talking points for protecting DD individual housing choices

These talking points are found on the website of the Wisconsin Council for the Deaf and Hard of Hearing. They are in defense of a senior housing project in Arizona called Apache ASL Trails, a project specially designed for seniors who are deaf and use American Sign Language to communicate. The housing project received a complaint from the U.S. Department of  Housing and Urban Development (HUD) that they were discriminating against people who were not deaf and therefore in violation of HUD anti-discrimination policies. HUD finally backed down and withdrew its complaint.

This case parallels in many ways the plight of people with disabilities who live in or wish to live in congregate housing and planned communities that are freely chosen by the individuals or their  legal guardians, and meet the unique needs of the people living in these settings.

Many federally-funded advocacy organizations and the Centers for Medicare and Medicaid Services have insisted that funding through Medicaid waivers and state plan services to people with developmental and other disabilities may be restricted if the settings in which people live are too "institutional" and not  "community" enough as defined by the CMS. [CMS is the federal agency that regulates Medicare and Medicaid.] Influential advocacy groups and the National Council on Disability have gone as far as defining as "institutional" any setting where more than 3 people with disabilities live or receive services together.

Final rules issued by the CMS on Home and Community Based services and settings in January 2014 were modified from earlier versions to answer criticisms from many groups [See the Community Choice Coalition] and individuals who believe that there are many ways of living in a community. Congregate settings are not inherently discriminatory and do not violate the often misinterpreted 1999 Supreme Court Olmstead decision .

Even facilities that are explicitly defined as institutions (Intermediate Care Facilities for people with Intellectual and Developmental Disabilities,  nursing homes, mental hospitals, and other hospital settings) were not considered inherently discriminatory by the Supreme Court in the Olmstead decision when they are  necessary for people who cannot successfully live in community settings. Individuals may not be removed from institutional care to community care if they do not agree to it. 

The legal underpinning for the talking points on Apache ASL Trails is section 504 of the Rehabilitation Act of 1973: 

"No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any  program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency. . ."  29 U.S.C. 794 

HUD rules regarding housing discrimination do not justify disqualifying projects such as Apache ASL Trails:

• 24 C.F.R. 8.4(b)(1)(iv) allows recipients of Federal funds to provide different or separate housing to individuals with handicaps, or to any class of individuals with handicaps, if such action is necessary to provide qualified individuals with handicaps with housing that is as effective as the housing that is provided to others. 
• 24 C.F.R. 8.27 requires that accessible units be marketed to individuals who need the accessibility features of the units, and that the accessible units first be offered to individuals who need the accessibility features of the unit. 
• 24 C.F.R. 8.22(c) allows HUD to approve a higher percentage of accessible units than the minimum percentages required by the regulations. This approval can be based on any available current data or evidence of a need for a higher percentage, and the regulations do not prohibit a property from making all of its units accessible to individuals with hearing or vision impairments.

According to the Talking Points:

• HUD’s insistence upon an arbitrary 25% limit on the number of accessible units that can be rented to people with disabilities who need the accessible features has no basis in Section 504 or its implementing regulations and would in fact be a violation of 24 C.F.R. 8.27. 
• Any quota, by definition, violates 24 C.F.R. 8.27 and discriminates against individuals with disabilities. The protections of federal disability rights laws are not first come, first served.

CMS and other federal agencies are also subject to Section 504 anti-discrimination rules, regardless of an agency's attempts to use anti-discrimination law to limit access to benefits and housing choices that the agencies and many advocacy groups would like to eliminate.

Action Alert from ACCSES : Opposition to policies limiting choice

This is an Action Alert from ACCSES, a national organization representing service providers for people with disabilities.

The federal Centers for Medicare and Medicaid Services are attempting to restrict choice for people living in community settings by proposing rules that claim that specialized services and residential options for people with disabilities in group settings are too institutional. If approved, these rules will limit Medicaid-funded Home and Community Based Services to only those services that meet the CMS ill-defined definition of "community".

The following has many suggestions for action if you disapprove of the CMS rules. Use what seems most appropriate for you and your family member with DD and modify it to fit your situation. There are also links to more information to help you better understand the issues. Also see The DD News Blog on proposed CMS rules .


*************************************************************

September 12, 2013
 
Action Alert
 
Immediate Advocacy Needed in Opposition to a Proposed Regulation that would Restrict or Eliminate the Full Array of Medicaid Home and Community-Based Services and Supports for People with Significant Disabilities
 
There is a crisis facing people with significant disabilities
that needs your immediate attention!

As you know, there is a concerted effort by some factions of the disability community to restrict or eliminate the use of Medicaid Home and Community-Based Services (HCBS) funding for services and supports provided in skill development centers (who they refer to as “sheltered workshops”); eliminate or phase out Section 14(c) of FLSA [Fair Labor Standards Act section that allows employers to hire a worker at less than minimum wage who has a disability for the job being performed and whose earning or productive capacity is impaired by the disability] and restrict use of HCBS funding to support residential community options such as placements in certain residential settings.

We have reviewed public statements by representatives from the Centers for Medicare and Medicaid Services (CMS) and “Special Terms and Conditions” entered into between CMS and New York State. It appears to us that CMS may now be demanding that renewals of HCBS waivers/state plan options [the agreements between the CMS and states that determine how Medicaid funds may be used to provide services to people with disabilities in community settings] include language prohibiting the use of Medicaid HCBS funds for prevocational services provided in skill development centers and restricting funding in certain residential placements that fail to meet the PROPOSED definition of “integrated setting” in a May 3, 2012 Notice of Proposed Rulemaking issued by the Secretary of Health and Human Services.

During the past two years, ACCSES members and the families of the people we serve have opposed restrictions on or the elimination of service options. We have submitted comments to the Secretary of HHS regarding the proposed HCBS regulations; asked members of Congress to submit comments and contact Secretary Sebelius; and have met directly with political appointees and career staff at CMS and various federal agencies and departments. ACCSES has also worked with members in several states to help them negotiate with their Medicaid agencies to ensure continued HCBS funding for the full array of services for individuals with disabilities.  A more extensive background document on the HHS proposed rule can be found here.

Given the most recent developments at CMS described above, there is an urgent need to expand our advocacy efforts. We need your help to pursue three related strategies.

First, if you have not already done so, contact your members of Congress and request that they send a letter to Secretary Sebelius (click here for draft letter) demanding that CMS cease using a proposed regulation under the Medicaid Home and Community-Based Services program as the basis for restricting state flexibility and for eliminating viable service options for people with significant disabilities and urging that the proposed language be modified to allow longstanding, successful program options to continue.

Second, identify any individuals you or your stakeholders know who have political “clout” and ask them to personally contact members of Congress, Secretary Sebelius, and/or The White House.

Third, send this action alert to individuals with disabilities you serve, their family members and friends and relatives, and others, which asks them to send letters to their Members of Congress urging them to send a letter to Secretary Sebelius requesting that CMS modify the language of the proposed regulation to allow community-based programs to continue providing the full array of home and community-based services.

Draft letters for providers and parents:
Letter from providers to parents and allies
For parents to Congress
 
Including a consumer story with a picture will add impact to your message.  The following story elements are ideal for the message.

An individual who benefits from skill development services who:

• experienced job exploration, discovery, job carving, job customization, and/or self-employment;
• tried competitive integrated employment including supported employment more than once and was not satisfied with the outcome;
• became unhappy and possibly regressed behaviorally;
• subsequently was employed at a skill development center;
• likes working at the skill development center; and
• shares with loved ones and others his/her pride in going to work and earning a pay check.

"Ideology trumps logic" in care for DD

David Kassel at The Real Choices in Care Blog has a lot to say about the extreme ideology of some disability advocates who oppose all congregate care for people with developmental disabilities. In his post "How Ideology trumps logic in the care of the developmentally disabled", 8/20/13, he observes that "according to the ideology, any care setting for the developmentally disabled that serves more than two or three disabled people at one time is now considered to be 'segregated' because it separates those people even momentarily from the 'community.'   No consideration is given here to the consequences of basing policy on this ideology or what the recipients or their families want or think. "

He goes on to note that for these advocates, closing developmental centers all over the country over the objections of families and guardians is not enough:

"Farming programs for the developmentally disabled must be shut down.  Sheltered workshops must be eliminated. Nursing homes that provide expert care for the disabled are seen as no different than nursing homes that do not have that expertise.  And group homes that house more than three people must be closed.   They are all potential congregate care settings and therefore too 'institutional' for the good of the people who participate in them or are served by them."

The ideology of these groups has permeated government agencies at all levels, including the Centers for Medicare and Medicaid Services and the U.S. Department of Justice. Only the assertion that "segregation is discrimination" is taken into account, often without evidence that any individual has actually been discriminated against (either forced into or prohibited from participating in a program or activity against the individual's will based on the person's status as a disabled person). Often the only criteria sited for establishing discrimination is that the person associates or lives with other people who are disabled. 

This is an ideology that unnecessarily causes suffering for both the individuals in need of specialized care and their families. Kassel includes a statement in his blog post from a father whose daughter lives at a specialized nursing facility in Massachusetts. He and other families lived in fear for years that their loved ones with extensive medical needs would be removed from the care they needed because of a lawsuit that has finally been resolved: 

"The (Seven Hills Center) families spent hundreds of hours in meetings and seeking out legislators to attempt to find someone to stand up for their children. Several of the parents sought medical help due to the increased anxiety and stress from the case. When their children died due to the natural course of their many medical problems, we all mourned together. None of us would mourn for the self-righteous extremist opponents of congregate care who imposed this hell on us. Not one of those advocates has shown a single iota of concern for the well-being of our children, who are among the neediest individuals in this world. If any one of them has a conscience, they should be deeply ashamed. We have never heard the slightest word of apology from them."

In the world in which many of these disability advocates live, there is no need to make distinctions between good care and bad, between differences in people that make congregate care not only necessary but desirable for some, but not for others, or to consider the potential harm in the policies they promote. All they know is that they know best and they are right. What a wonderful fantasy that must be.

Latest Revisions to the Michigan Dual Eligibles Plan

Jennie and friends

The Michigan Association of Community Mental Health Boards (MACMHB) and the Michigan Association of Hospital Plans (MAHP) issued a joint letter to members on changes to the state plan to integrate the care of people eligible for both Medicare and Medicaid. In negotiations with the Centers for Medicare and Medicaid Services (CMS), the federal agency that oversees and regulates Medicare and Medicaid, a preliminary agreement has been worked out with the state. 

The Dual Eligibles plan will be scaled back to a 3-year demonstration project to be implemented in selected regions of the state.  Michigan and the CMS will formally conclude negotiations with a Memorandum of Understanding (MOU) that will be the basis for this implementation.

Neither the number nor location of regions has yet been decided. The state has recently approved a new regional configuration for Pre-Paid Inpatient Health Plans (PIHPs), reducing the number of PIHPs in the state from 18 to 10. A PIHP is the administrative entity over local Community Mental Health agencies. Within each selected region, no sub-populations or sets of services will be excluded from the plan.
   
According to the letter:

CMS will require three-way contracts between the federal government, the state and management entities selected to participate in the project. 

• Management entities will include integrated care organizations (ICOs) and prepaid inpatient health plans (PIHPs). 
• In the proposed plan, ICOs will cover physical health and long term care services, including but not limited to, institutional and community based long term services and supports and pharmacy.
• In the proposed plan, PIHPs will cover behavioral health and habilitative services, including developmental disabilities, mental illness, or substance abuse problems.

Here is the map of these new regions. The Integrated Care Organizations will cover the same regions as the PIHPs. (The CMH Partnership of Southeast Michigan will remain intact and continue to include Washtenaw, Livingston, Monroe, and Lenawee Counties). "Once selected, each region and contracted entities, (ICO/PIHPs) will be maintained for a total of three years to accommodate evaluation requirements."

In addition:

• Eligible individuals will be automatically enrolled into the integrated system, but can opt out prior to enrollment as well as after beginning to receive services.
• Michigan is continuing its process to include stakeholder input on an ongoing basis throughout the course of the demonstration.
• Subject to CMS approval, the program will begin providing coverage in January of 2014.

Other details in the letter and documents on the Michigan Integrated Care Web site include schedules for Integrated Care Organizations to apply for contracts. Here is more information and background on the Dual Eligibles Plan. Stay tuned for further developments.

Bait and Switch: Do proposed CMS rules on person-centered planning undermine decision making by the person-centered planning team?

This is one issue that I did not cover in my comments  on the Centers for Medicare and Medicaid Services (CMS) proposed regulations [CMS-2249-P2] for Medicaid Home and Community Based Services (HCBS) waivers. Although the CMS explicitly endorses the use of person-centered planning in determining services for people using HCBS waivers, at the same time it takes away some of the authority of the PCP team to make decisions concerning the individual with a disability by allowing a "functional needs assessment" to determine clinical and support needs.

This is from background information on the proposed rules:

The person-centered service plan must identify the strengths, preferences, needs (clinical and support), and desired outcomes of the individual. The person-centered planning process is conducted in a manner that reflects what is important for the individual to meet identified clinical and support needs determined through a person-centered functional needs assessment process and what is important to the individual to ensure delivery of services in a manner that reflects personal preferences and choices. [emphasis added]

I think the most accurate translation of this is that a so-called "person-centered functional needs assessment process", probably a standardized state assessment, will determine the clinical and support needs of the individual. Although the individual will necessarily be the object of the needs assessment, there is no guarantee that the individual or his or her guardian will have any say in the identification of needed services. By the time the person-centered planning process occurs, the needs that will be written into a service plan will already be determined. The PCP process will be reduced to an exercise in self-expression by the individual who will be allowed to express preferences within the limits of the needs already determined, rather than allowing the individual and people who know and work with the person to determine what, when, where, how, and by whom the services will be provided.

Although in any program that uses public funds to pay for services, there is a need to determine overall eligibility for the program, but that is essentially an administrative function and should not be confused with the practical aspects of working out the details of what services will be needed and the conditions under which they will be provided.

The Michigan Developmental Disabilities Council submitted comments on this issue to the CMS. [Developmental Disabilities Councils are mandated by the federal Developmental Disabilities Assistance and Bill of Rights Act to advocate for people with developmental disabilities and to pass on federal funds in the way of grants to further the goals of the DD Act.] 

These are the comments  from the Michigan DD Council:

Under ‘Person-Centered Planning,’ it says, “A requirement for a person-centered functional assessment is set forth in the proposed rule which ensures that an objective assessment is the cornerstone for determining level of need.”

Michigan advocates do NOT support standardized functional assessment. State law requires that the Person-Centered Plan determines what a person’s needs are and what supports he or she should receive. When service providers have used a functional assessment, it has been typically to establish funding levels, which should only be determined by a person-centered planning process. Allowing such an instrument to overrule the Person-Centered Plan completely negates the PCP process. Advocates in Michigan have repeatedly opposed this over a period of many years. I understand that CMS does not endorse using functional assessment for this purpose, but experience tells us that, when it is used, it becomes a rate-setting process.

Other comments:

•    Too many professionals will use those tools to rationalize taking choices away from an individual. It is too often used as an excuse to allow someone else to totally control decisions for another person's life. A standardized test should never be used as an excuse to segregate or exclude someone. They should not be used to decide someone's competence or have a huge weight in major life decisions.
•    Standard assessment can be a way to impose the professional’s opinion on the person whose life it is. It becomes a barrier rather than assistance.
•    The major question is how a standard assessment process would interact with person-centered planning, because it is often used to overrule the PCP.
•    Assessment may not truly reflect a person’s wants versus identified and recognized needs and quality of life issues.
•    Assessment always implies that you know something that the person being assessed doesn't, and professionals feel obligated to use it regardless of the choice of the person.
•    When standard assessment has been used before, and in other circumstances, it has worked out badly for the person being assessed. Standard assessment can be a way to impose the professional’s opinion on the person whose life it is. It becomes a barrier rather than assistance.