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?

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]?

Thursday, January 14, 2016

Does Closing Sheltered Workshops Increase Supported Employment for People with DD? Not Necessarily !

Supported employment services are defined in the federal Developmental Disabilities Act
The term 'supported employment services' means services that enable individuals with developmental disabilities to perform competitive work in integrated work settings, in the case of individuals with developmental disabilities—
- for whom competitive employment has not traditionally occurred; or
- for whom competitive employment has been interrupted or intermittent as a result of significant disabilities; and 
-who, because of the nature and severity of their disabilities, need intensive supported employment services or extended services in order to perform such work.
    There is a national movement to employ more people with disabilities in competitive, integrated work settings where they can work side-by-side with non-disabled employees and make the same wages for the same work. This is a reasonable goal for most people with disabilities and a welcome change from an assumption that people with disabilities are unemployable in regular work settings. At the same time, there is a push to close facility-based work programs (sheltered workshops) that serve people with more severe disabilities. These specialized settings often offer other services and social opportunities that are not available elsewhere. 

    The Michigan Developmental Disabilities Council is considering supporting legislation that could eliminate the use of “subminimum wage certificates” that allow employers to pay people with disabilities less than minimum wage if the individual is not as productive as non-disabled workers doing the same job. These certificates are issued by the U.S. Department of Labor to provide incentives to employers to hire more people with disabilities. 

    In Michigan, most of the subminimum wage certificates go to sheltered workshops. Without the use of these certificates, it is likely that sheltered workshops would eventually be driven out of business. There are no suggestions that I know of from advocates who want to get rid of the subminimum wage that these be replaced with other incentives or subsidies to keep facility-based programs open. The elimination of subminimum wages is essentially another way to close sheltered workshops. The only option for employment for people with DD would be supported employment in competitive, integrated work settings, a scenario that is unlikely to work for people with more severe disabilities.

    Evidence from Michigan and other states where sheltered workshops have closed do not support the idea that people with DD who need and want employment will be able to find jobs when the only option is supported employment. In some cases, unemployment among people with DD has increased and the percentage of people using supported employment services has decreased after sheltered workshops have closed.

    Ottawa County, Michigan, is feeling the impact of closing a sheltered workshop. Kandu, a popular nonprofit organization that trained and hired adults with disabilities, cognitive impairments or other barriers to employment, ceased operations in August of 2015. Of the 681 people with developmental disabilities served by Ottawa County Community Mental Health, 170 worked at Kandu.  96% of those employed in sheltered workshops in Michigan worked more than 14 hours per week for an average wage of $2.50 per hour. 

    At meetings with the local Community Mental Health agency, it was agreed that integrated employment should be a priority, but families questioned whether this option was feasible for all, based on these factors:
    • The availability and affordability of supports that enable a person to work
    • Sufficient employers able and willing to create jobs and pay at least minimum wage
    • The actual ability of a person to perform a job function
    The community is divided between those who agree with a philosophy that presumes that everyone is employable and a concern that eliminating the subminimum wage and closing sheltered workshops will reduce the opportunities available to people with DD to be employed.


    In 2008 a law went into effect to increase supported and integrated employment for people with disabilities. The law also phased out the use of sheltered workshops. The CHIMES Foundation and The George Washington University issued a report on the experience of people with significant disabilities who were employed by sheltered workshops as well as providers who formerly operated sheltered workshops in Maine. 

    The key findings in the report, "Transitions: A Case Study of the Conversion from Sheltered Workshops to Integrated Employment in Maine", included:

    • People who had been employed in sheltered workshops have seen their hours worked per week decline.  2/3rds of those previously employed are no longer employed and those who are working earn less per week because of the reduction in the number of hours worked. 
    • In 2008, the year Maine Public Law Chapter 101 went into effect, 39.5% of people with disabilities were employed.  That number dropped to 34.1% by 2012.
    • Sheltered workshops in Maine were employing 558 people with Intellectual and Developmental Disabilities (IDD) in 2001.  There were no people employed in sheltered workshops in 2010.  The number of people with IDD who were served in integrated employment in Maine also declined during the years from 2001 to 2014.
    • Employment data for people with intellectual disabilities in Maine show an average of only 12 hours worked per week in 2011, the lowest in the nation.
    • After the passage of the law, non-work placements increased dramatically from 550 to 3,178.
    • Level of disability was one characteristic commonly cited as a factor impeding placements for some people who are no longer employed.
    Washington State

    The Center for Health Care Strategies September 2012 Report (on page 17) includes experiences with “Employment First” in  Washington State. This was part of an effort to “...focus all publicly-funded resources for persons with I/DD to finding and keeping paid employment in the real world as opposed to sheltered workshops or recreational activities like bowling or excursions to the mall. Although the state continues to fund support staff for sheltered workshops, it is phasing them out in favor of finding their clients jobs in places like Fred Meyer, Starbucks, and PETCO.”

    According to the report: 

    • In 2008 Washington spent roughly $50 million on employment-related services for people with developmental disabilities. Some 3,700 beneficiaries currently hold paying jobs, but most of these individuals are relatively high-functioning; among those with more severe disorders, only 17 percent have found work (30percent in Seattle).[emphasis added] In part, this can be attributed to the  recessionary job market when prospective employers can typically select from a surfeit of applicants, many of whom are overqualified for the position.
    • At the same time, many families of adult children with I/DD are asking whether the state is going too far in believing that people who have difficulty communicating or using the bathroom will be able to find and keep a job. After repeated objections, the state softened its position somewhat and allows beneficiaries who have made no progress in finding employment after one year to be eligible for publicly-funded recreational activities instead.

    The disability news website Disability Scoop featured a somewhat misleading article on closing sheltered workshops in Vermont, “A Bet On Inclusion Pays Off” by Chris Serres of  the Star Tribune [Minnesota] on 12/16/15.

    According to the article:

    "In 2002, Vermont became the first state to stop funding sheltered workshops. The state also ended the practice, still common in other states, of using Medicaid to subsidize group homes for people with disabilities.

    "Instead, the state sends money directly to clients with disabilities for services of their choosing, such as job coaching and transportation.

    "Today, Vermont leads the nation in almost every measure of workplace inclusion. Vermonters with intellectual disabilities are twice as likely to find jobs in the community as their counterparts in other states. Nearly 40 percent work in the community alongside people without disabilities, compared with 13 percent in Minnesota, for example.

    "The 'Vermont model' of supported employment has thrived. Within three years, 80 percent of the employees at the state’s last sheltered workshop had found paying jobs. It has the highest rate of community job placements for clients with developmental disabilities; in 2013, its rate was nearly six times the national average."

    To be fair, the article also catalogs abuses in Vermont's sheltered workshop programs. It exposes a dark side of the provision of services to vulnerable people with disabilities when providers and state and local agencies are not held accountable for abuses that occur under their supervision.

    A quick look at Vermont’s record on supported employment as reported in the "UCP [United Cerebral Palsy] Case for Inclusion 2015" tells a different story. The percentage of people with Intellectual and developmental disabilities (ID/DD) in supported employment has decreased since Vermont closed its sheltered workshops:

    A graph tracking supported employment shows these figures:

    2004   43%
    2006   48%
    2009   38%
    2011   35%



    Efforts to increase competitive employment for people with DD in integrated settings should not be expected to offset the need for specialized employment services based on the severity and nature of an individual's disability. "Robbing Peter to pay Paul" (or in this case, closing sheltered workshops to fund more supported employment),  is never a good policy decision when it comes to people with needs as diverse as those with developmental disabilities.

    Tuesday, January 12, 2016

    Ian the Great is 31!

    Today is my boy's 31st birthday. Here he is thirty years ago and he is still just as sweet and adorable, charming everyone who knows him with his winning personality.

    Monday, January 11, 2016

    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=
    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

    Friday, January 8, 2016

    Maine: Drastic reductions proposed in services to severely DD adults in the name of Independent Living

    In an article in the Portland (Maine) Press Herald, “Out of the spotlight, DHHS cuts away at humane care”, 1/6/16, Bill Nemitz covers a story unfolding in Maine that could spell disaster for adults with severe developmental disabilities. The state justifies cuts to services by claiming that it wants to realign services with what people actually need. This is not a new concept, but Maine officials also want to “guard against attitudes that would inappropriately limit what an individual can do,” says Health and Human Services Commissioner Mary Mayhew.

    Those bureaucrats in Maine may have a cruel streak or maybe they are just delusional, but at least they have a sense of irony, as Nemitz points out. They are calling their new assessment policy, the “Supporting Individual Success rate-setting initiative”.

    For people unfamiliar with disabled adults with profound disabilities, especially those with dangerous behaviors that put them at extreme risk of harm, it may be hard to believe that their needs justify so many service hours. But consider the testimony of the executive director of a provider of residential services. He says that 76 of 91 people that his agency serves will have their service hours cut and gave examples of the people affected:
    • Peter, 91, whose diagnosis includes profound mental retardation and a host of other disorders, will see his staffing hours drop from 200 per week (at times he needs two staffers) to 69.
    • Mariya, 30, has autism with severe mental retardation and takes 30 medications per day. Her hours will decrease from 232 to 99.
    • Thomas, 54, has autism with severe mental retardation and several other disorders along with a recent diagnosis of melanoma. His hours will drop from 240 to 102.
    • Jono, 28, has autism, mental retardation, cerebral palsy, mood disorder and severely intrusive behaviors. He gets 210 hours now; he’ll soon get 102.
    • Dan, 24, has mental retardation, quadriplegic cerebral palsy, seizure disorder and is unable to talk or feed himself. His hours will drop from 141 to 99.
    Mary Mayhew from DHHS says in response to criticism of the proposed initiative that the state will create a new system that is “free from the perverse incentives that may exist from the providers’ perspective.”

    If the proposed scheme to allow people to live independently without the services they need doesn’t work for these severely disabled adults, they can appeal to the state for extra help. The qualifications for staffing, however, will be so high that when extra help is approved, providers fear they will not be able to meet the standards proposed by the state. As a father of two affected adults described it, "...It's designed for failure."

    Read more of the story for many more personal stories from families.

    Thursday, January 7, 2016

    Intentional Communities of Washtenaw : New transportation services in Washtenaw County

    From Intentional Communities of Washtenaw:

    This month at the ICW meeting we will learn about what is new in transportation services from the Ann Arbor Transportation Authority. This is a meeting of special interest for persons with disabilities and their families.

     Our presenter will be Brian Clouse who is the ADA/Paratransit Coordinator at Ann Arbor Area Transportation Authority (TheRide).  Brian is responsible for many programs including ARide, GoldRide, Fare Deal, Travel Training, service eligibility and project management of in-house and contracted paratransit services for persons with disabilities, seniors and persons with low-income.  Bus and A-Ride services have recently been expanded and you will want to learn about these changes.

    Brian has also told us he will try to bring his travel trainer with him so you can learn first-hand about how to get comfortable taking TheRide.    

    These monthly sessions are a great way to learn more about supporting loved ones who are living with developmental disabilities and to meet people who have similar interests.  Whether you are part of Intentional Communities now or are just looking for more information, you will be most welcome.
    Where & When:

    Washtenaw Intermediate School District
    1819 South Wagner Rd.
    Ann Arbor, Michigan 48103
    (Between Liberty and Scio Church Roads)

    Tuesday, January 12, 2016
    7:00pm to 8:30pm

    Washtenaw County CMH Town Hall Presentation - 1/20/16

    From WCCMH Customer Service:

    Washtenaw County Community Mental Health

    Join us at 5:30pm for a presentation on the programs and services
    that Washtenaw County CMH has to offer and learn about all of the
    exciting changes that have taken place over the past year as we
    transitioned into Washtenaw County Community Mental Health.

    Town Hall Presentation
    January 20, 2016 5:30 p.m.
    Washtenaw County Learning Resource Center
    4135 Washtenaw Ave., Ann Arbor 48108

    For more information please contact Customer Service: or 1-877–779-9707

    Sally Amos O’Neal, MS, LBSW
    Director of Customer Service
    Washtenaw County Community Mental Health
    555 Towner St.
    Ypsilanti, MI 48197
    734.544.6807 desk
    734.544.6732 fax

    Friday, January 1, 2016

    The DD Act : Policies and Principles Through the Looking Glass

    Recent posts on the DD Act  - an in-depth look at the DD Act and how it helps but also harms people with developmental disabilities.

    The DD Act “Policies” apply to all programs, projects, and activities funded under Title I of the Act. The principles that are the basis for policies are listed in the DD Act and are similar to the “findings” in the DD Act in that they include statements that are inconsistent with the definition of developmental disability

    People with DD present a wide spectrum of abilities and disabilities and individuals vary greatly in their degree of functional limitation. Many of the statements of principle fail to acknowledge these differences and assume abilities that many do not have.

    While most of the principles listed in the DD Act are an accurate reflection of the needs and circumstances of people with DD and their families, many are merely assertions based on wishful thinking and false generalizations about people with DD. They reveal an unwillingness by policy makers and their advisers to acknowledge the full scope of developmental disabilities.

    Many people with DD have been unjustly excluded from participation and inclusion in their communities. An admirable goal of the DD Act is to correct this injustice. No less important, however, is the injustice of limiting access to specialized services and living situations that many people with DD need and prefer for both their survival and enjoyment of life. Because the DD Act policies do not identify these preferences or promote their availability, a part of the DD population is excluded from consideration in the DD Act. Policies that fail to recognize diversity among people with DD, often result in unnecessary controversy, pitting one faction against another, rancorous infighting, and harm to the people who are supposed to be helped. 

    Many people with DD will never be fully capable of independence, self-determination, productivity, and full inclusion and integration in the community, even with every imaginable support that might be offered. Their right to services and support appropriate to their individual needs is confirmed by the DD Act Bill of Rights . The DD Act findings, purpose, and policies, however, do not assure that these rights will be respected. 

    Because DD Act programs rely on the inaccurate assertion that all people with DD have the potential to be fully capable adults and integrated into “the community”, program activities are necessarily limited to those that promise to transform people with DD into economically productive and self-reliant citizens or at least improve their image. The Act lacks a commitment to people for whom these goals are not fully achievable.

    One of the selling points to policy makers for spending money on DD Act programs, is the claim that people with DD and their families do not need or want expensive specialized services that may not result in full inclusion and integration into the community. Whether or not this is true, it is an appealing way to market programs. Add to that the admonition by federally-funded advocacy groups that using public funds to support services that are not promoted by the DD Act, may violate the rights of people with DD. The rationale for this claim is that specialized services that are used primarily by people with disabilities are inherently discriminatory, because they separate people with disabilities from non-disabled people. Even when the people served and their families fully support and participate in decisions assuring that services are appropriate to the needs and preferences of the individual, it seems to make no difference to these advocates.

    Providing a rationale for policy makers to eliminate costly (but necessary, for many) programs while advancing the "rights" of people with disabilities must be music to the ears of state politicians looking for justification to balance their budgets on the backs of those most in need. A perfect example of this is happening in Maine where the state is poised to slash services to severely disabled adults in the name of independent living.

    It is worth repeating that  the DD Act does not fund direct services to people with DD unless the services are incidental to DD Act program activities, nor are programs funded by the act ultimately accountable to or responsible for providing the services that people need.


    DD Act Policies annotated:

    POLICY.—It is the policy of the United States that all programs, projects, and activities receiving assistance under this title [Title I of the DD Act] shall be carried out in a manner consistent with the principles that—

    The first policy or principle listed in the DD Act is this:

    1. individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of self-determination, independence, productivity, and integration and inclusion in all facets of community life, but often require the provision of community services, individualized supports, and other forms of assistance;

    This disregards the definition of developmental disabilities that includes people with functional limitations in any or all of the areas listed here. It supposes that much of the DD population is not worth mentioning. It tends to exclude people with severe intellectual disabilities and those with behavioral disabilities with the most severe manifestations of those conditions.

    2.   individuals with developmental disabilities and their families have competencies, capabilities, and personal goals that should be recognized, supported, and encouraged, and any assistance to such individuals should be provided in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of such individuals;

    3.   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;

    This means that individuals and their families are of primary importance in determining the services and supports that individuals receive. Federally-funded advocates and DD Act programs do not determine individual needs.

    4.   services, supports, and other assistance should be provided in a manner that demonstrates respect for individual dignity, personal preferences, and cultural differences;

    5.   specific efforts must be made to ensure that individuals with developmental disabilities from racial and ethnic minority backgrounds and their families enjoy increased and meaningful opportunities to access and use community services, individualized supports, and other forms of assistance available to other individuals with developmental disabilities and their families;

    6.   recruitment efforts in disciplines related to developmental disabilities relating to pre-service training, community training, practice, administration, and policymaking must focus on bringing larger numbers of racial and ethnic minorities into the disciplines in order to provide appropriate skills, knowledge, role models, and sufficient personnel to address the growing needs of an increasingly diverse population;

    7.   with education and support, communities can be accessible to and responsive to the needs of individuals with developmental disabilities and their families and are enriched by full and active participation in community activities, and contributions, by individuals with developmental disabilities and their families;

    This is true with the qualification that “communities”, even with the best of intentions, may not be able to adequately serve everyone, depending on the nature and severity of the person’s disabilities and the resources available.

    8.   individuals with developmental disabilities have access to opportunities and the necessary support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, communities, and States, and the Nation;

    Stated without qualification, this is simply not true. There are plenty of examples of communities that do not provide access to opportunities and necessary supports that are adequate to serve people with DD.

    9.   efforts undertaken to maintain or expand community-based living options for individuals with disabilities should be monitored in order to determine and report to appropriate individuals and entities the extent of access by individuals with developmental disabilities to those options and the extent of compliance by entities providing those options with quality assurance standards;
    Yes, this is very important. If monitoring were given the attention it deserves, it would likely become more clear that a full array of options must be available to serve people with DD.

    10.  families of children with developmental disabilities need to have access to and use of safe and appropriate child care and before-school and after-school programs, in the most integrated settings, in order to enrich the participation of the children in community life;
    This is true, but it should use wording from the Americans with Disabilities Act regulations on integration: ...access to...“the most integrated settings appropriate to the needs of the individual."

    11.  individuals with developmental disabilities need to have access to and use of public transportation, in order to be independent and directly contribute to and participate in all facets of community life; ...
    The lack of accessible public transportation is a real barrier to participation in all kinds of activities. Non-public forms of transportation are also important, however, as long as it gets people to where they need to go. Independence and contributing in all facets of community life involve a lot more than public transportation, although overcoming the lack of transportation is a major hurdle.

    12.  individuals with developmental disabilities need to have access to and use of recreational, leisure, and social opportunities in the most integrated settings, in order to enrich their participation in community life.

    Again, using the phrase from ADA regulations, people with DD need to have access to the most integrated settings appropriate to the needs of the individual  and a full array of options, recognizing that all settings are not appropriate for all individuals.


    [This post has been revised several times over the last week. I do not mean to confuse readers. I am just trying to get this right...JB]