In March 2017, DHS released a data brief on “Employment Choices for People with Disabilities in Minnesota” that summarized – “What We Know” about people with Intellectual or Developmental Disabilities (I/DD). Recently, DHS has been publicly stating that we know that 50% of people with disabilities want competitive integrated employment; and, in a recent article, Commissioner Piper was quoted as saying – “50% of people with I/DD and 40% of people with physical disabilities who are unemployed want to work”. I have been told both assertions are based on the most recent results of the National Core Indicators (NCI) Survey and, after reviewing the Minnesota NCI report, can find no data that supports either statement.
Before sharing some of the report results it is important that the reader understands what the NCI Survey is and the following is the language from the “NCI Adult Consumer Survey Outcomes – Minnesota Report 2014 – 2015 Data”.
The National Core Indicators survey is a voluntary effort by state developmental disability agencies to track their performance using a standardized set of consumer and family/guardian surveys with nationally validated measures. The effort is coordinated by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI).
NCI has developed more than 100 standard performance measures (or ‘indicators’) that states use to assess the outcomes of services for individuals and families, including outcomes in the areas of employment, rights, service planning, community inclusion, choice, health, and safety. In 2015-16 a total of 45 states, the District of Columbia, and 22 sub-state entities were participating in NCI.
The NCI Family/Guardian Survey is used to gather data on family outcomes. It is mailed to families who have an adult family member who lives outside of the family home and receives services from the State Developmental Disabilities (DD) Agency (that is, the survey respondent does not live with the person receiving supports). The survey collects demographic information on the individual receiving services and the person who fills out the survey (the ‘respondent’; usually a parent) as well as information on services and supports received. The survey is continually refined and tested to ensure that it is valid and reliable.
In 2015-16, a total of 6,173 Family/Guardian Surveys were completed across 14 states. The survey contained six groupings of questions (“sub-domains”) that probe specific areas of quality service provision: information and planning, access and delivery of services, choice and control, community connections, satisfaction, and outcomes. Respondents also had the option of writing open-ended comments concerning their family’s participation in the service system.
States were asked to administer the survey to a random sample of at least 1,200 families, all of whom have an adult family member with a developmental disability who lives outside of the family home and receives at least one direct service or support other than service coordination.
All states mailed out a paper survey to families selected in their sample. A sample size of 1,200 was recommended with the expectation of a 40% return rate or greater (yielding 400 or more usable responses per state). However, most states decided to sample more than 1,200 families, expecting a lower response rate than 40%. A final sample size of 400 would guarantee a +/- 5% margin of error and a 95% confidence level when interpreting the results. Both the confidence interval and margin of error used are widely acceptable standards for reviewing results, regardless of population size. States with fewer than 1,200 potential respondent families were instructed to send surveys to all eligible families. With response rates lower than expected, we also included in our national reports those states that submitted fewer than 400 surveys up to a margin of error of no greater than +/- 7%.
The NCI Family/Guardian Survey is a tool for assessing system-wide performance. It is not intended to be used to monitor individuals or providers. The NCI Statewide Average should not be interpreted as defining or providing a benchmark for “acceptable” levels of performance or satisfaction. Instead, it describes average levels of performance or satisfaction across the State; it is up to public managers, policy-makers, and other stakeholders to use the data to determine programmatic and policy-related priorities. (End of description)
While Minnesota was asked to survey at least 1,200 families, it is unknown how many surveys were actually sent to families by DHS. At most, it appears they had 404 respondents to the employment domain which is .0027% (404/150,262) or less than 3/10ths of 1% of the state’s total population of people with I/DD (2nd bullet below) and only 1.6% (404/26,000) of the people served in supported employment settings. So, based on the NCI report, what does DHS think it knows?
1. Apparently DHS believes that – “Throughout the world, paid work is a crucial aspect of culture and identity. Many people organize their lives around their jobs. Employment helps define a person’s place in the community.” Because I am not sure that paid work is a crucial aspect of the aborigine culture and identity, or many others, I will confine my thoughts to the State of Minnesota beginning with findings from two independent public sources.
- From the “StateData: The National Report on Employment Services and Outcomes 2015” published by the Institute for Community Inclusion at the University of Massachusetts Boston; in 2014, Minnesota had a total population of 5,457,000 of which 3,217,676 were of working age (16-64) with only 2,603,597 or 81% employed.
- From the same report, a total of 150,262 or 2.7% of the total population had a cognitive disability (I am going to use the term I/DD). When applied to the working age group of 3,217,676 (bullet above), the result is an estimate that 86,877 people between 16 - 64 have an I/DD. If the norm is that only 81% of working age adults without a disability are employed, then only 70,370 Minnesotans with I/DD would be the norm expected to work.
- In school year 2010 – 2011 the Minnesota Department of Education reported an unduplicated count of 24,130 special education students ages 16 – 21 (more recent data could not be found). Subtracting that group from the 70,370 people with an I/DD projected to be working (2nd bullet) leaves 46,240 people with I/DD between the ages of 22 – 64 that should, by all accounts, be employed.
- From a 3/27/17 presentation by Vikki Wachino, former Director of CMS, 2 of 5 people with disabilities are funded by Medicaid (MA). Applied to the 22 – 64 age group results in 18,496 working age adults with disabilities funded by MA and closely matches the number of people with disabilities served in Day Training & Habilitation programs. It also likely means that the balance of 27,744 working age adults (22 – 64) with disabilities not funded by MA (60%) are working independently without formal I/DD support services.
2. DHS message – “Only 26% of them had a paying job in the community”.
Report finding - of 404 respondents, 105 had a paid job in the community which is 26% and 9% higher than national average.
My interpretation – why doesn’t DHS acknowledge how successful Minnesota providers have been in finding competitive integrated work for people with I/DD long before they approved the employment first policy.
3. DHS message – “Among those without a paid job in the community, 59% wanted one”.
Report finding - of 140 respondents without a paid job in the community, 82 wanted a paid job in the community (10% higher than national average).
My interpretation - if 105 respondents have a job in the community (item 2), then 299 do not (404 - 105), and if only 82 "wanted one" this is 27% of the respondents not the 59% reported. Also, it is important to remember that most of the respondents are likely to be the most capable and motivated to complete the survey creating a self-selection bias that results in higher “wanted” responses than would be found in a non-biased group.
4. DHS message - “Most people told us they like their paid community job (91%), but when asked if they’d rather work somewhere else, many (26%) said they would rather work somewhere else”.
Report finding – If 105 respondents have a paid job in the community (item 2), and 26% of them would rather work somewhere else, that is 27 people which is only 7% (27/404) of all respondents.
My interpretation - in my view 7% of the respondents does not rise to the level of “many”.
5. DHS message – “Similarly, most agreed they liked their day program (86%), but even though they like their program, 35% of those told us they would rather be doing something else”.
Report finding – of the 267 respondents attending a day program (17% lower than national average), 35% or 93 people, would rather be doing something else which is 23% (93/404) of all respondents.
My interpretation – Again, why doesn’t DHS acknowledge that our numbers served in supported employment services is significantly less than the national average and; exactly what is “something else” because if it has anything to do with playing golf count me as part of the 23%.
As most know, anyone can twist the numbers to support their position – as I have in this editorial – and the NCI report makes it clear that the data is “not intended to be used to monitor individuals or providers” and it is up to “public managers, policy-makers, and other stakeholders to use the data to determine programmatic and policy-related priorities”. With results from only .0027% of the population, and instructions that findings are not to be used to monitor individuals or providers, why the message from DHS that “50% of people with I/DD and 40% of people with physical disabilities who are unemployed want to work”? Also, I don’t remember any meetings between public managers, policy-makers, and other stakeholders on how to use the NCI data to determine programmatic and policy-related priorities?
Instead, what we have is a bureaucracy determined to prop-up its flawed philosophy found in the employment first policy that “all working age Minnesotans with disabilities can work, want to work, and can achieve competitive integrated employment” despite an independent data source showing that only 81% of working age adults without disabilities in Minnesota are employed. Furthermore, from the early outcomes of the WIOA section 511 process, anecdotal results suggest that less than 15% of clients served in supported employment programs are interested in even considering competitive integrated work; and, I suspect, fewer still will actually pursue competitive integrated work when they fully understand the realities of that choice.
Let me be clear, I support individualized services and when a client expresses a desire to explore competitive integrated work that preference should be honored as it is routinely occurring in supported employment programs. With less than 26,000 people served by less than 150 providers one would think that if DHS truly wanted to know how people with I/DD felt about the quality of their lives we could easily get that data and not rely on some national report based on .0027% of the population. The question is – when is DHS going to stop issuing byzantine quotes and genuinely listen to what people with I/DD and their families want so that new services can be added without diminishing current options?
In April 2016 I posted an editorial about extremism and decided to pause while considering my next strategy. A lot has happened in the ensuing 9-months and not much of it was good for people with disabilities. An upcoming DHS meeting on 1/27 with providers to “develop a strategic planning process addressing the future of DT&H services,” has compelled me to comment before my next strategy is ready to be revealed. With the start of a new year, I will do this by adding the numbers of the year (2+0+1+7) to offer 10 truths found in the very documents cited to support these reform initiatives.
Workforce Innovation and Opportunity Act (WIOA)
1. Section 458 of WIOA was amended by adding section 511 requiring the designated statue unit (DEED) to ensure that as of 7/22/16 people with disabilities under the age of 25 receive transition services, vocational rehabilitation, and career counseling before admission to a supported program and/or annual career counseling, information, and referrals along with information about self-advocacy, self-determination, and peer mentoring training opportunities to those paid a special minimum wage after admission. Ensuring that people with disabilities have sufficient experiences and information to make an informed choice is a good thing and nothing in section 511 requires that supported programs using a commensurate wage certificate be eliminated.
Statements from the Olmstead Court Order (filed 9/29/15)
2. Many individuals with disabilities in this state value living and working alongside other individuals with disabilities in settings such as group homes and sheltered workshops. The Court emphasizes that the Olmstead decision is not about forcing integration upon individuals who choose otherwise or who would not be appropriately served in community settings (page 12 - 13). This was supported by then Commissioner Jesson in her 9/16/15 letter to the Court stating a fundamental principle that “…government and service providers begin listening to individuals about what is important to them in creating or maintaining a personally-valued community.”
3. The goal of placing individuals with disabilities in the most integrated setting must be balanced against what is appropriate and desirable for the individual (page 13).
4. The Olmstead Plan is not about and should not be construed as forcing closure of certain facilities or forcing integration where it is neither appropriate nor desirable. Rather, it is about increasing available choices so that each individual can make meaningful decisions about how to live, work, and interact with the community (page 14).
5. The State must continue to assess its goals and priorities to ensure that they align with the goals and priorities of individuals with disabilities (page 14).
Department of Justice (DOJ)
6. In their statement on the application of the ADA integration mandate and the Olmstead decision, the Department of Justice (DOJ) has asserted that the civil rights of people with disabilities are “violated by unnecessary segregation in a wide variety of settings, including segregated employment, vocational, and day programs” (underline added).
7. From this same document the DOJ states ~ “Employment service systems may include a range of service settings, including sheltered workshops; supported employment services provided in competitive, integrated employment; small group or enclave employment; facility-based programs; and integrated day services provided in typical community settings” (underline added).
Olmstead Plan Workplan ~ Employment (9/30/16 being used for comments)
8. “The policy does not call for the elimination of certain service options or closure of certain facilities” (page 22). This was supported by then Commissioner Jesson in her 9/16/15 letter to the Court that stated “..the Plan is not about eliminating certain service options or closing specific facilities”.
HCBS Transition Plan
9. In their document “HCBS Final Regulations 42 CFR Part 441: Questions and Answers Regarding HCBS” it states on page 5 that “people may receive services with other people who have either the same or similar disabilities, but must have the option to be served in a setting that is not exclusive to people with the same or similar disabilities.”
10. In the document, “Questions and Answers About the HCBS Rules it states on page 5 that “CMS had made clear that states have the authority to decide whether and when to offer facility-based day programs.”
Considering these 10 truths leads me to the following questions:
- Why aren’t the commensurate wage regulations seen as a “reasonable accommodation” permitting individuals with disabilities that are unable to meet competitive work requirements to earn a special minimum wage?
- Why is intentionally choosing a DT&H setting by a waiver recipient not valued by DHS?
- Why is it not acknowledged that many individuals with disabilities have characteristics that are inappropriate for the broader community and a DT&H setting is necessary as documented in their CSSP-A?
- Why does it appear we are diminishing or eliminating DT&H programs through “1,000 cuts” when the focus should be adding to the array of employment service options?
- How has the Olmstead Implementation Office ensured that the plan’s employment goals and priorities align with the goals and priorities of individuals with disabilities?
- Why aren’t the provisions of 245D sufficient to demonstrate that person centered planning is resulting in individualized service plans and that a DT&H setting is necessary for many individuals with disabilities?
- How has the State determined that its employment service system does not have sufficient capacity for competitive integrated employment as required by the DOJ?
- Why does it appear that DHS is intent on changing DT&H services when they are needed, desired, and permitted in their current form?
- Why don’t the new section 511 requirements sufficiently demonstrate that people in segregated settings have the option to be served in a non-segregated setting?
- Why won’t DHS officially acknowledge that facility-based DT&H services are an essential part of its employment services system?
Thomas Jefferson once said ~ “In matters of style, swim with the current; in matters of principle, stand like a rock”. As someone who frequently wears Zubaz, I am usually out of the mainstream style and I am willing to stand against the reform current and defend DT&H settings for as long as people with disabilities want and need this service. In my view, DHS needs to embrace DT&H settings as a legitimate choice for some element of the disability community and find ways to sustain its availability throughout the state. What needs to change is their attitude, not the service.
Sometime back I read the book Tribes by Seth Godin and decided to subscribe to his daily email blog. On February 22 of this year I received the following post in my inbox:
At the edges it falls apart.
Extremism is rarely the thing we need.
Absolutes let us off the hook because they demand not to be negotiated.
But absolutes usually bump into special cases that are truly hard to ignore.
The good middles, the difficult compromises that matter, that’s where we can build things that have long lasting impact.
We need a compass and a place to go.
But the road to that place is rarely straight and never absolute.
For the last number of years I have tried to negotiate with those having a different perspective of the service system than mine and their timeline for reform without any meaningful compromise. So I am going to use this editorial to relieve some emotional tension (catharsis) about the following reform initiatives that are being proposed free from any restriction or condition (absolute).
In my view Minnesota’s court-approved Olmstead Plan is a reasonable document that affirms individual choice and moves the system towards more inclusive settings. The following two passages from the court order support my view:
- “The Olmstead decision is not about forcing integration upon individuals who choose otherwise or who would not be appropriately served in community settings”, and
- “…(the) goal of placing individuals with disabilities in the most integrated setting must be balanced against what is appropriate and desirable for the individual.”
Where the edges begin to fall apart for me is goal two on page 21 of the 10/9/15 version of the “Olmstead Plan Workplan – Employment” that states: “By June 30, 2020, of the 50,157 people receiving services from certain Medicaid funded programs, there will be an increase of 5,015 or 10% in competitive integrated employment”. That the goal is 5,015, or 10% is an absolute that is not conditioned by the individual choices of 50,157 people with disabilities who have yet to be asked the question if they are interested in competitive integrated employment.
Employment First Policy
The 9/29/14 version of the Minnesota Employment First Policy states that: “Employment First means raising the expectation that all working age Minnesotans with disabilities can work, want to work, and can achieve competitive integrated employment; and each person will be offered the opportunity to work and earn a competitive wage before being offered supports and services.” Using the word “all” is an absolute that even some supporters of this policy admit is not true and yet there is no willingness to consider compromise language such as: “Employment First means raising the expectation that working age Minnesotans with disabilities can work, want to work, and will be offered the opportunity to earn a competitive wage before being offered supports and services”. I cannot fathom, or endorse, a policy that even the most militant of supporters has to know is not true and is also contrary to individual choice.
HCBS Transition Plan
Reading all the guidance on this rule I came away with the understanding that the Centers for Medicare and Medicaid Services (CMS) is requiring the Minnesota Department of Human Services (DHS) to ensure that recipient’s funded by the HCBS waiver do not receive institutional services and are not intentionally isolated from the broader community. Further, nothing in the CMS rules prohibits facility-based settings and the rule established a definition of HCBS settings “based on the individual experience and outcomes, rather than one based solely on a setting’s location, geography, or physical characteristics.” Yet, DHS actions to date appear to be focused only on a setting’s location, geography, or physical characteristics free from any conditions regarding individual experiences and outcomes.
I have to acknowledge that for an exceptionally small minority group the Kool-Aid Krew has been very impactful in swaying people’s opinion to their views. In this case that is not admirable because by refusing to find “good middles” many stakeholders are unwilling to collaboratively build programs that can have a positive and long lasting impact. So, I’ve decided I am done trying to reason with the militants and will briefly pause while considering my next strategy.
Thanks for reading, I feel better already.
In memory of Jerry Mueller, former Executive Director of MnDACA, (June 27, 1944 – March 26, 2016)
A gracious host and colleague that appreciated that I said what needed to be said
to those that needed to hear it.
OLMSTEAD PLAN – A TOE HOLD
On September 29, 2015, U.S. District Court Judge Donovan W. Frank approved the State’s August 10, 2015 Olmstead Plan and is reviewing the October 9, 2015, Olmstead Workplans (hereinafter “Workplan”) submitted by the Olmstead Subcabinet. All three documents can be viewed at:
Olmstead Plan Overview
The 8/10/15 version is a 152-page document that offers definitions, visions, achievements, and measurable goals for each of the 13 specific domains called-out in the Olmstead Plan. Although improved from previous drafts, I disagree with the Court’s approval because:
- its data and measurement goals are either missing, confusing, or inaccurate;
- there is no detail on how case management will be reformed to ensure informed choice and person-centered planning happen for each recipient;
- elements of the plan are contrary to individual choice; and
- the plan implies that no new funding is needed.
This version was approved though, so now we move to what does this mean? My thoughts in this editorial will be limited to the following three topics:
- Assurances from Commissioner Jesson’s September 16, 2015 letter to Court that references pages 535 – 540 of the Dispute Resolution Plan issued by the Olmstead Implementation Office.
- Relevant statements from the Court Decision.
- Employment issues found on pages 21 – 28 of the Workplan.
Commissioner Jesson’s Letter
I have found the Commissioner to be a deliberate communicator and her three-page letter in response to the Levy Amicus Brief included a number of notable points that included:
- A bold statement that “…government and service providers begin listening to individuals about what is important to them in creating or maintaining a personally-valued community”; and we need to hold DHS to the expectation of listening to individuals and redirect policy discussions that do not honor personal values (e.g., Employment First Policy).
- The term “productive employment” and not “competitive-integrated employment” was used when referencing the Plan’s vision statement; a term more consistent with individual choice.
- Acknowledgement that:
- people with disabilities should receive community-based services when the affected individual does not oppose it;
- segregated settings will be the preferred choice for some; and
- the Plan is not about eliminating certain service options or closing specific facilities.
- A dispute resolution for “individuals who believe that they have not received services or supports in accordance with the principles set forth in Olmstead v. L.C.” (page 537 of the dispute resolution process plan). In offering this “meaningful” protection the Commissioner has essentially promised no harm to people with disabilities and the Court made a point of urging the State to “…remain vigilant to the public’s fears and concerns. Individual choice must remain a guiding factor in the delivery of community services and supports. The State must continue to assess its goals and priorities to ensure that they align with the goals and priorities of individuals with disabilities”.
In my view all of these concepts must be woven into the Workplan to engage stakeholders in the collaboration needed for success. Further, broader representation than the MN Employment First Coalition is needed on the employment section of the Workplan to include clients and providers of centered-based services. If I have understood the Commissioner’s declarations accurately, the real work of the Olmstead Plan has just begun and all stakeholders need to remain vigilant to ensure these foundational assurances are reaffirmed during each annual review process and any subsequent plan amendments.
The Court’s 15-page decision has a number of subtle nuances and statements that I believe are worth mentioning. First, it is unusual that the Court’s final order would even mention an Amicus Brief much less dedicate two pages of reminders to “…ensure that individual choices are honored and respected.” Second, footnote 8 cites the Amicus Brief of Ivan Levy establishing it as part of the Court’s file; that brief references Merrick multiple times and the order by the Court supports many of its arguments. Third, the Court acknowledges that many “…individuals with disabilities in this state value living and working alongside other individuals with disabilities…”, emphasizing that “…the Olmstead decision is not about forcing integration upon individuals who choose otherwise or who would not be appropriately served in community settings”, and the “…goal of placing individuals with disabilities in the most integrated setting must be balanced against what is appropriate and desirable for the individual.” Finally, and here is where the buck stops, the state “…must also allocate its resources and funding according to the informed choices of those whom the Olmstead Plan is meant to serve.” In summary, the following statements are true if I have interpreted the Court’s reminders accurately:
- Not honoring informed choice is any easy dispute to bring back to the Court;
- It is okay for people with disabilities to live and work alongside others with disabilities;
- Integration cannot be forced on people with disabilities and must be balanced with what is appropriate; and
- Funding cannot be taken away from service options chosen by individuals with disabilities.
The State’s 79-page draft workplan dated 9/22/15 has been submitted to Magistrate Judge Becky R. Thorson who will make recommendations for the Court to consider before approval. My comments here are limited to the six employment strategies found on pages 22 – 28 of the document.
Strategy 1: Implement the Employment First Policy (EFP)
I have refuted the EFP many times and won’t belabor my reasoning again other than to say it is fundamentally flawed and does not respect informed choice. Therefore, I am astounded to see it cited in the Workplan and even more struck that the Minnesota Employment First Coalition is listed as a “partner.” An element of MNAPSE, according to an 11/6/15 visit to their webpage, this coalition is comprised of only six like-minded providers, of which two are residential providers, along with the U of M, and Arc Greater Twin Cities. Not exactly a coalition that represents the 20,000 clients served by the 100+ members of Minnesota Organizations of Habilitation and Rehabilitation (MOHR). As the Executive Sponsors, Jeremy Hanson-Willis and Jennifer DeCubellis need to add representatives of MOHR to match the number from MNAPSE if a balanced Workplan is to be developed that will engage all stakeholders.
Day Training & Habilitation (DT&H) programs have not been determined “segregated” yet in the DHS response to the federal guidelines on defining Home & Community-Based Services (HCBS). Until such time there are no “segregated” DT&H programs and this word should be replaced by center-based throughout the Workplan. Likewise, DT&H providers do not offer “facilities” and this word should be replaced with “programs” throughout the Workplan. Finally, most would agree that developing a framework for informed choice is long overdue and testing should include DT&H programs.
Strategy 2: Develop an interagency data system to improve measurement of integrated employment
Other than replace “segregated” with “center-based” the only other issue is the difficulty in securing the wage, benefit, and hours worked data on clients hired directly by the business.
Strategy 3: Reform funding policies to promote competitive, integrated employment
As long as the data gathered supports an “individual’s informed choice for employment” as stated in “Key Activity A”, and representatives from MOHR are included as a partner, this activity should be helpful when DHS gets federal approval for the new Employment Exploration, Employment Development and Employment Support Service waiver options.
Strategy 4: Develop additional strategies for increasing competitive, integrated employment among people with disabilities
The first revision is adding “to those that want it” to the strategy statement as was done at the Employment Impact Summit cited throughout this Workplan. The focus is on activity within the school systems and needs to include data on why graduating students do not choose competitive, integrated work, the choices made, and longitudinal data on the success of all choices.
Strategy 5: Implement the Workforce Innovation and Opportunity Act (WIOA) and Section 503
Since the WIOA regulations have not yet been issued, clearly the deadlines for any of these actions will need to be extended. The second bullet under item “B.1” may be an overreach to include people that have already selected programs that use the commensurate wage regulations to pay clients.
Strategy 6: Implement the Home and Community Based Services (HCBS) rule in a manner that supports competitive, integrated employment
The intent of this strategy is fundamentally wrong and I reject all of its activities until “competitive, integrated employment” is replaced with “individual choice.”
In summarizing my thoughts on this Workplan, until the partners include a better balance of day service providers, clients and/or their families, and some current employers this section should not be approved. It is also lacking the specifics needed to understand how Vocational Rehabilitation Services, State Services for the Blind, and Medicaid funded programs will increase competitive, integrated employment by 19,385 people by 6/30/2020.
In closing, there is much work to be done on gaining consensus on the work to be done. Still, the Court has given clients an important “toe hold” on this slippery slope called “Medicaid Reform” by making it very clear that the State cannot force integration upon individuals who choose otherwise or who would not be appropriately served in community settings. As providers it is our duty to make sure clients and their families know they can dig in their toes and stop being pushed down the slope to a place they do not want to be and have access to needed resources to make sure their informed choice is honored and funded.
THE BRITISH ARE COMING
This is the 30th posting to Bark’s Bytes and perhaps the most opinionated to date. In fact, I was not certain it would ever see the light of day. What convinced me to take the risk was the March 10th Rally at the State Capitol attended by as many as 2,000 people with disabilities and their caregivers. Although focused on the 5% Campaign, what inspired me to “say what I thought needed to be said” was the conviction of people with disabilities to be treated as valued citizens by their government and, in my view, the recent Medicaid reform initiatives do not.
According to “Putting the Promise of Olmstead into Practice: Minnesota’s 2013 Olmstead Plan” dated November 1, 2013; “An Olmstead Plan is a way for a government entity to document its plans to provide services to individuals with disabilities* in the most integrated setting appropriate to the individual. In the landmark civil rights case, Olmstead v L.C. 527 U.S. 581 (1999), the United States Supreme Court held that it is unlawful for government to keep people with disabilities in segregated settings when they can be supported in the community; and the Court, and subsequent Department of Justice (DOJ) guidance encourages states to develop plans to increase integration” (*italics added for reference). If successful, according to the plan, Minnesota will be a place where:
“PEOPLE WITH DISABILITIES ARE LIVING, LEARNING, WORKING, AND ENJOYING LIFE IN THE MOST INTEGRATED SETTING.”
Understanding that I am just one voice with my own experiences, bias, and foibles - there are some key terms/phrases in this explanation that I have italicized for reference and want to call out for discussion.
Individuals with disabilities. Since this general term is used in the Olmstead Plan we must assume that it includes individuals with any disability including autism, intellectual/developmental (I/DD), mental health, physical, or sensory that might be a temporary or lifelong condition. If correct, one has to ask if a single approach can really be measurably impactful across the seven domains of the plan that include: community engagement, employment, housing, health care and healthy living, lifelong learning and education, supports and services, and transportation. From an employment perspective, how to provide work support to someone with a physical disability is very different than someone with I/DD. To propose similar strategies and measures may result in outcomes that mean nothing to any specific group and/or not move us towards any desired goal. In short, the plan is too broad in scope to articulate measurable goals for any of the sub-groups of people with disabilities and, more troubling, establishes goals not even desired by one or more of these sub-groups. This is the critical point where the frame of reference needs to change from government mandates for all service recipients, to a self-directed state policy mandating informed choice for each person with a disability.
Setting appropriate for the individual. In all of these legal briefs, plans, and policies it sounds like everyone believes in “informed choice” yet the Courts, DOJ, and now the MN Department of Human Services (DHS) seem to have already decided that only integrated settings are appropriate for individuals with disabilities regardless of their choice. To support/enforce their “plan” they seem intent on eliminating service options and shaming those that choose something other than competitive integrated work. To me, informed choice has the following four elements: (i) incorporates life experiences; (ii) discloses relevant information; (iii) provides access to a reasonable array of service options; and (iv) validates an individual’s decision. At some point government needs to get “real” and either declare that it only intends to fund options it deems worthy or make a commitment to a self-directed policy and support informed choice.
Segregated Settings. A basic definition of segregation is – the forcible separation of a group or class from the rest of society based on a notable characteristic difference; and, I submit, that no person with a disability served in a day program in Minnesota funded by the home and community-based service (HCBS) waiver is segregated simply because they have CHOSEN the service being provided (Bytes #17, Link: http://www.merrickinc.org/barks-bytes/272-end-of-story.html). The DOJ seems to disagree by defining segregated employment settings as – “…(c) settings that provide for daytime activities primarily with other individuals with disabilities; (d) employment settings not located in mainstream society’s competitive labor market; (e) employment settings where individuals with disabilities are assembled into a collective or work group; (f) employment settings where individuals with disabilities are present in greater numbers than non-disabled workers, customers, or the general public, as applicable; (g) employment settings whereby individuals with disabilities contribute more than 50% of the direct labor to the production of goods and services for government contracts…”. If I choose to live in 55+ housing this is an “intentional community” and not segregation so why is a person’s informed choice to work in a facility-based program with their peers or part of a collective work group of peers labeled as a segregated setting and therefore “bad”?
In the community. Our programs are located in the communities of Vadnais Heights and North St. Paul, are not in a building that also provides inpatient treatment, and are not located on the grounds of, or immediately adjacent to a public institution. The clients we serve often visit shopping centers, restaurants, parks, libraries, post offices, and other local attractions. Our company supports the local Lions Club and elementary school and is a member of the North St. Paul Business Association, Vadnais Heights Rotary Club, Vadnais Heights Economic Development Corporation, and White Bear Chamber of Commerce. Further, we have partnerships with over 100 local businesses that provide us a service, support our fundraising events, or provide work to clients. So, if we are not “in the community” I need some GPS coordinates to find my office; and does it really matter since we appear to be a segregated setting which has already been determined as bad?
Integration. If you have read any of my previous posts you know I am soooooo done with this term (Bytes #28 LINK: http://www.merrickinc.org/barks-bytes/348-half-baked.html). To me it is all about inclusion because you simply cannot define integration in a way that works for everyone. The DOJ makes my point by offering the following draft definition of an integrated setting - “(a) provides individuals with disabilities opportunities to work and receive services in the greater community, like individuals without disabilities; (b) is located in mainstream society; (c) offers access to community activities and opportunities at times, frequencies, and with persons of an individual’s choosing; (d) affords individuals with disabilities the opportunity to interact with nondisabled persons who are not paid care-givers to the fullest extent possible based on the typical interactions of the type of job”. Huh? I mean really, what is the “greater community”, who is the control group of individuals without disabilities that is used for comparisons, where is this “mainstream society” located exactly, and how does anyone determine the “typical interactions” surrounding any type of job? I can’t say it anymore plainly than this is just crap. If someone feels known and valued in their community they likely feel included, which is all that really matters.
More rarified insight is provided in federal legislation that defines competitive integrated work as – “Work that is performed on a full-time or part-time basis (including self-employment) for which an individual is compensated at a rate that shall be not less than the higher of the rate specified in section 6(a)(1) of the Fair Labor Standards Act of 1938 (29 U.S.C. 206(a)(1)) or the rate specified in the applicable State or local minimum wage law; and is not less than the customary rate paid by the employer for the same or similar work performed by other employees who are not individuals with disabilities, and who are similarly situated in similar occupations by the same employer and who have similar training, experience, and skills; or in the case of an individual who is self-employed, yields an income that is comparable to the income received by other individuals who are not individuals with disabilities, and who are self-employed in similar occupations or on similar tasks and who have similar training, experience, and skills; and is eligible for the level of benefits provided to other employees; that is at a location where the employee interacts with other persons who are not individuals with disabilities (not including supervisory personnel or individuals who are providing services to such employee) to the same extent that individuals who are not individuals with disabilities and who are in comparable positions interact with other persons; and that, as appropriate, presents opportunities for advancement that are similar to those for other employees who are not individuals with disabilities and who have similar positions”. Have you got that memorized? Essentially this means that every client at Merrick, Inc., should be working full- or part-time, making at least minimum wage, with the same benefits as employees without disabilities in similar positions, at a location that has no other workers with disabilities. Piece of cake, especially if you don’t care what the person with a disability wants or if they sit at home waiting for a job that won’t materialize. If the person with a disability feels the work they do is a valued job then, regardless of government definitions, it is.
The 9/29/14 version of the Minnesota Employment First Policy asserts that – “…all working age Minnesotans with disabilities can work, want to work, and can achieve competitive integrated employment…”. Yet, according to the State Data Book 2011 published by the Institute for Community Inclusion (ICI) at the University of Massachusetts, only 75% of ALL Minnesotans of working age (16 – 64) are employed. This is where the VAPOR (Very Appealing Promises Obfuscating Reality) gets thick because any rational person should know that this assertion can only be false. Yet the Olmstead Sub-Cabinet has adopted the Employment First Policy in a fast-tracked process that did not include much engagement of working age adults with disabilities or their families. More damning is the simple truth that this policy is contrary to the very core principal of person-centered planning that allows a working age adult with disabilities to make a choice – including the choice to work, not work, or work in something other than competitive integrated employment.
Not to be left out, the Centers for Medicare and Medicaid Services (CMS) issued new rules in January 2014 that outline mandatory requirements for person-centered planning and home and community-based (HCB) settings. As explained by DHS in a November 2014 document, “It general, it is intended to give participants receiving home and community-based services increased choice and integration into the community. CMS requires each state to create a transition plan detailing how the state will come into compliance with the requirements by March 17, 2019”. Reading all the CMS guidance on this rule I came away with the understanding that they want DHS to ensure that recipient experience is not institutional and does not isolate participants from the broader community. A noticeably different take than the DHS understanding and they are making this way more complicated then is needed. I attended the DHS “Provider Self-Assessment Training” on 3/19/15 and, although nothing in the CMS rules prohibits facility-based settings and the rule “established a definition of HCB settings based on the individual experience and outcomes, rather than one based solely on a setting’s location, geography or physical characteristics”, it seems very unlikely that any of the 100+ DT&H providers will be found in compliance with the state’s application of the CMS rule. If we cannot come into compliance by 3/17/19 with criteria not yet defined by DHS we will be deemed an institution and ineligible to provide services funded by the waivers; and, from a public relations standpoint, it is much easier to eliminate institutional services then community-based services. How is making DT&H programs ineligible to serve over 10,000 working age adults with disabilities funded by the waiver increasing their choices?
I’ve tried to add some humor in my comments and in truth it’s not funny at all when you look past the disingenuous promises of choice and integration to find the subtle intent emerging from these three reform initiatives – and it ain’t good. While there are many definitions of terrorism, most would agree the action boils down to the following three elements used by those attempting to exert control:
• Demanding you believe what they believe;
• Taking options away to diminish your choices; and
• Using rules and social pressure to force your compliance.
How does the Olmstead Plan, Employment First Policy, and HCBS Transition Plan measure against these elements? Well it seems they:
• Assert a belief that all working age adults with disabilities can work, want to work, and can achieve competitive integrated employment;
• Intend to eliminate special minimum wage certificates and expect that all people with disabilities earn at least minimum wage; and
• Propose policies and regulations to forcibly close facility-based programs.
It may sound far-fetched, however, in my view these three reform initiatives are tantamount to social terrorism and if we cannot convince government to be more inclusive it will be a very different and less accommodating waiver program in Minnesota in the very near future. Although they have a head start, it is not too late and recipients of HCBS services, families, professionals, and advocates need to get engaged to:
1. Revise the employment section of the Olmstead Plan to have goals and actions specific to each of the unique disability groups;
2. Replace the Employment First Policy with a Self-Directed Policy, yet to be written, that mandates informed choice; and
3. Require that the state’s Transition Plan define day services as meeting the CMS definition of a home and community-based setting.
Our forefathers appealed to their King for representation in exchange for taxation and their voices were not heard leading to the American Revolution. It is time again for a revolution, not with guns, but with action to reclaim individual choice over government mandates. Each of us need to tell our Senator and Representative, the MN Disability Law Center, and the Olmstead Sub-Cabinet that we reject social terrorism and hold to the belief that self-direction for people with disabilities is only achieved when informed choice is realized one person at a time.
The British are coming – do you see the lanterns in the belfry tower?