Friday, February 12, 2016

Michigan's Bipartisan Disabilities Awareness Caucus

This is from the Michigan Association of Community Mental Health Boards (MACMHB):
Bipartisan Disabilities Awareness Caucus Formed

Friday, February 5, 2016

Late week, State Representative Frank Liberati (D-Allen Park) and state Senator Rick Jones (R-Grand Ledge) announced the formation of the Disabilities Awareness Caucus, a bipartisan, bicameral effort that will focus its attention on policy issues facing those with a disability.

“I serve as a board member of the Special Olympics Michigan. Many concerns of special needs children and adults have been brought to my attention over the years, and I hope to work on some of these concerns with this caucus,” said Jones, a co-chairman of the caucus.

“We have brought together a great group of legislators who will bring disability issues to the forefront of policy discussions in Lansing,” said Liberati, who will also serve as co-chairman of the legislative caucus. “It is time we put words into action.”

Other members of the caucus include; Senators Curtis Hertel Jr. (D – Lansing) and Margaret O’Brien (R – Portage), and Representatives Hank Vaupel (R – Fowlerville) and Christine Greig (D – Farmington Hills).

On Thursday, MACMHB staff met with Representative Liberati to discuss MACMHB’s interest and potential partnership with the caucus. Rep. Liberati has a tremendous amount of passion around these issues as he is a parent and advocate of a 19 year old son with an intellectual/developmental disability.

I do not have email addresses for these legislators, but here are websites for the Michigan House of Representatives and the Michigan Senate . As you might imagine, legislators can be swamped with emails, especially when big issues are being decided. They are always willing to hear from constituents in their own districts, but it may be difficult to get through if you are not in the legislator's district. A phone call to a legislator's office might help you to find an email address for a legislative aide who is willing to pass on messages from you or to put you in touch with people dealing with a specific issue.

Go forth and exercise you democratic perogatives. Big budget battles are coming.

 Happy birthday, A. Lincoln 

Thursday, February 11, 2016

Comments on Guardianship and Supported Decision Making to the National Council on Disability

Supported Decision Making or SDM is a national intiative to reform or replace court appointed guardianship. It is described here as "a process in which adults who need assistance with decision-making... receive the help they need and want to understand the situations and choices they face, so they can make life decisions for themselves, without the need for undue or overbroad guardianship".

The following are comments I made to the National Council on Disability (NCD) during a panel discussion on guardianship and Supported Decision Making on 2/11/16.


My name is Jill Barker and I am from Ann Arbor, Michigan. I have two adult sons who have profound physical and intellectual disabilities. Danny is 39 years old and Ian is 31 years old. They both function at about the level of a six-month old infant, and are totally dependent on other people for their care and well being. My husband and I are their plenary co-guardians which gives us the tools we need to assure that their rights are protected, that they receive the services they need, and that they are treated with dignity and respect. We monitor their care, participate in decisions affecting them, and intervene when their interests are being neglected or ignored.

I have read a great deal about Supported Decision Making. The core belief espoused by its advocates is that all people with developmental and intellectual disabilities must be presumed to be capable of making decisions for themselves. What is rarely acknowledged is that there must also be a mechanism to overcome this presumption when there is evidence that a person is unable to make or communicate decisions in some or all aspects of their lives. This lack of capacity is likely to put the person at substantial risk of neglect, abuse, or exploitation.  Guardianship is designed to be that mechanism.

I would also add that people with severe or profound disabilities who lack the capacity to make decisions and do not have a guardian or other legal representative to protect them, are likely to be at the mercy of public agencies that are strapped for cash and are focused on reducing the cost and number of services they provide to people with DD.

Many advocates for SDM state explicitly that their goal is to eliminate guardianship. Others state that this is not what they are trying to do, but their words and actions show that they intend to make guardianship as difficult to obtain as possible. Advocacy organizations espousing SDM are also poised to obtain funding from federal agencies to promote Supported Decision Making and as such are in a poor position to claim that their only interests are the rights of people with disabilities.

In Virginia and Missouri, there have been recommendations to make Supported Decision Making a part of their guardianship laws and to make it mandatory for a guardian to espouse the belief that their family member is capable of making decisions, even when a court of law has determined otherwise. This is an outrageous imposition on people with disabilities and their families.

If Supported Decision Making training is found to be valuable by individuals and families, then, by all means, they should have access to it, but this should be strictly voluntary. When an individual or guardian is involved in a supported decision making process, it should be made clear from the outset that all decisions are ultimately up to the individual and family, or a court-appointed guardian, when there is one. In any federally-funded program there should also be protections in place to protect the privacy of the individual, prevent coercion from having choices imposed on the individual, and to prevent unwanted intrusion into their personal lives.

Thank your for your consideration of my comments.

Wednesday, February 10, 2016

Parents of adults with DD : Before I'm Gone

A short preview of parents of developmentally disabled adults discussing their fears for their children's future.

You can watch the full version and find more information at Parent Advocates for Neurodevelopmental Housing in San Francisco.

Sunday, February 7, 2016

Washington State : ICFs providing necessary services

Washington State Residential Habilitation Centers are part of the full range of services necessary to serve people with developmental disabilities. RHCs are Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) that are funded and regulated by The Centers for Medicare and Medicaid Services. They are facilities that provide services to people with the most intense medical and behavioral needs. 

ICFs/IID have other names depending on the state such as Human Development Centers, Developmental Centers, Training Centers, etc.

Unfortunately, these centers are closing all over the country because of a deliberate misinterpretation of the 1999 Supreme Court Olmstead decision, by a misguided desire by states and the federal government to save money, and by the zealotry of federally-funded disability rights organizations that oppose institutions on principle without consideration of the individual needs and circumstances of people served by ICFs/IID. 

Instead of expanding the use of these centers to meet the needs of their surrounding communities, the 2014 HCBS (Home and Community-Based Settings) rule makes it almost impossible for the greater community to access the resources of ICFs. The HCBS rule disallows funding for settings in the proximity of ICFs or for ICF services unless they meet strict "heightened scrutiny" criteria. This has the effect of marginalizing people who live in these facilities and their families and cutting off solutions to serving people with severe disabilities in the community that could alleviate their desperate need for services.

Here is background information on ICFs/IID.

Because We Care - Beyond Inclusion is a great source of information on RHCs in Washington State and commentary on the need for a full continuum of services and care for people with DD.

Monday, January 25, 2016

The Flint Water Crisis : All of Flint's children should be assumed to have been exposed to lead

I have already heard people trying to downplay the Flint water crisis by saying that the lead poisoning wasn't as bad as reported or that the city is responsible for this because it did not manage its budget properly. When Flint changed its water supply in April 2014 under an emergency manager who was brought in to resolve the financial crisis in the city, the people in charge decided to save a little money by not adding phosphate to the Flint River water. Phosphate prevents the corrosion of old pipes that otherwise leach lead into the water supply and would have prevented the disaster that followed.

A recent article in the Detroit Free Press "All Flint's children must be treated as exposed to lead" by Kristi Tanner, 1/16/16, includes these recommendations to the State: 
"In recommendations to the state on Monday, Dr. Mona Hanna-Attisha said all kids under the age of 6 should be treated with some kind of prevention actions.

"Eden Wells, the state's chief medical executive, said Monday that all children who drank the city's water since April 2014 have been exposed to lead. 'It is important when we think about a public health perspective that we consider the whole cohort ... exposed to the drinking water, especially 6 years and under since April 2014,  as exposed, regardless of what their blood level is on Jan. 11.'

"The state's most recent report, based on  tests conducted between October and December 2015, shows that 43 people — only a small portion of the number exposed — had elevated blood lead levels. That's because these tests measure only the amount of lead in a person's blood, which decreases after about 30 days, according to the U.S. Centers for Disease Control and Prevention."

See video here from CNN.

Sunday, January 24, 2016

Washtenaw County deal to lessen impact of mental health cuts


"New deal to lessen impact of Washtenaw mental health cuts", by Ryan Stanton, 1/21/16: Supported employment programs to stay with WCCMH, skill building programs to be contracted out.  

Kelly Belknap, the county's chief financial officer, explains the financial implications of a compromise on mental health cuts:
"County officials are trying to close a $2 million-plus gap in the CMH budget, citing state cuts in mental health funding as the reason.

"While a number of cuts, including job eliminations, still are proposed under the new plan, they're viewed as less severe now.

"But the savings don't quite close the gap, so the labor unions are asking for $1.2 million in transitional funding to carry CMH through the end of 2016.

"This will allow them time to reorganize and restructure, so the savings that are needed will become structural starting in January 2017." ...

[County Commissioner] Rabhi offered his own take on the mental health cuts the county is forced to make, taking a shot at state leaders.

"'When you have tax cuts for the wealthiest Michiganders, and a lack of investment in our infrastructure and public services, those tax cuts roll downhill, and the budget cuts that happen roll downhill," he said. "And at the local level, where the rubber hits the road, where the services are important, this is where those cuts then come.'

"Rabhi mentioned the Flint water crisis, calling it another consequence of running the government like a business and putting money before people. He said the state is putting pressure on local government to drive down costs and pay workers low wages, and he considers that an unacceptable way to serve citizens."


Thursday, January 21, 2016

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.

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 guardianshipIn 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?