(game in which three nutshells are moved about on a table & you must guess the one with a pea underneath)

More than 4 years after its implementation the Disability Waiver Rate System continues to confuse clients and their families, puzzle case managers and county clerks, and delay payments to providers due to untimely and incorrect service agreements. So why did the Minnesota Disability Services Division (DSD) decide to make things even more difficult by fracturing Supported Employment Services (SES) into three distinct services called employment exploration (EES), employment development (EDS), and employment support (ESS)?

Some at DSD have stated that it was to track and report on the wages of those with Intellectual or Developmental Disabilities (I/DD) paid directly by the business. A few mention it was needed to meet the reporting requirements of either the Statewide Transition Plan, Olmstead Plan, or both. Others at DSD explain it was to better define distinct actions within the three services and calculate a sufficient rate. Finally, an official DSD presentation suggests it came out of the 28 employment and day services stakeholder workgroup meetings it has hosted since 4/14/15 and the 20 town-hall community stakeholder meetings conducted throughout the state in 2016.

Having read most public documents (i.e., Center for Medicare and Medicaid Services [CMS], Department of Justice [DOJ], DSD, & Olmstead Office) related to the state’s Medicaid (MA) “reform initiatives,” in my opinion all of this is a bunch of hooey and the real reason is DSD wants to diminish the purpose of Day Training & Habilitation (DT&H) programs with an end-game to close these center-based programs. Don’t believe me? Consider the following:

I understand a few readers were unclear if the most recent Bark’s Bytes was my opinion or the position of MOHR. To be clear, all postings of Bark’s Bytes are strictly my opinion. Even when I quote others, their statement is being used by me to make a point and does not imply they agree/disagree with my opinion. Still, to be clear I’ve updated the Bark’s Bytes disclaimer to read ~ “This is an opinion piece. The views stated here are those of JWB, not those of Merrick, Inc., or any other group. You may agree or disagree with his views, but just keep in mind that man still wears Zubaz and chooses to shave his head. Consider yourself advised…”.  Now to the subject of this posting.

All of us know there are times you look back on a moment or decision and realize a mistake was made and a correction warranted. Most disability stakeholders in Minnesota (MN) would agree that the 7% rate cut on July 1st was a mistake. Yet the MN Department of Human Services (DHS) is unwilling to make a correction. As one MN Senator stated in an email I read, this Commissioner only wants to fight. My immediate reaction was how can she seriously think fighting is in the best interest of those counting on the system to support and honor their choices in having a good life?

Using information gathered from other sources I will try to provide a concise summary of the how I think the 7% rate cut unfolded.

  • Implemented on January 1, 2014, the Disability Waiver Rate System (DWRS) used a Direct Support Professional (DSP) wage that resulted in rates insufficient to address the growing workforce shortage. As a result, the legislature increased rates by 1% on 4/1/14, 5% on 7/1/14, and 1% on 7/1/15. This total increase of 7% was not a COLA, or bridge until the inflationary adjustment was applied in 2017, but was enacted by the legislature as permanent adjustments to address the ongoing workforce shortage. Accordingly, the legislature approved a bill in the 2018 session to “fix” the situation that was included in an omnibus bill the Governor vetoed for unrelated reasons.
  • In early 2018, DHS submitted a request to the Centers for Medicare and Medicaid Services (CMS) to approve various changes to the DWRS. During that review the confusion regarding the 7% rate increases arose between CMS and DHS. Whether as a result of serious miscommunication, or lack of factual accuracy, DHS conveyed that the 7% increases were COLAs which apparently led CMS to conclude that Minnesota was stacking a COLA and inflationary adjustment during the same rate year.
  • CMS seemed concerned about the miscommunication as evidenced in an email sent on 2/23/18 to DHS stating that ~ “Nothing in my communication was meant to be interpreted as a requirement from CMS for the state to eliminate a legislatively approved annual COLA, but rather to ensure that the COLA and rebase did not occur in the same year”.
  • In spite of the CMS email, the Commissioner has repeatedly and steadfastly represented that DHS was required to cut rates as a direct result of instructions and information provided by CMS and claims that if not done, CMS would deny federal financial participation. To my knowledge nothing has been offered by the Commissioner that validates her position.
  • The 7% rate cut was implemented by DHS on 7/1/18 resulting in a $147 million dollar reduction in waiver funding for disability services in SFY 2019, 2020, and 2021 despite state law approving the 7% rate increases. With no other options to protect services, and the 7% increases still being the law, providers initiated legal action against the Commissioner that is scheduled for a hearing in federal court on 11/1/18.

At this point there is not much that can be done since it is unlikely that a legal resolution will happen before a new Governor takes office and the current Commissioner’s last 2 months are largely irrelevant. What is relevant is the next Governor needs to appoint a Commissioner that regards all of the stakeholders as genuine partners in providing services that people with I/DD want and need within the regulatory and funding constraints in place. In my view it should not be an academician, bureaucrat, DHS consultant, hospital administrator, lawyer, or political sycophant. A provider would be a good choice or a MN legislator that actually knows something about the services DHS administers and cares that DSPs make a livable wage. A commitment to making things simpler without being simple and having genuine empathy for those we serve and their families would also be important qualities to look for in a Commissioner.

Although up to the task, I am getting weary of fighting the bureaucracy and truly hope that our next Commissioner inspires DHS leadership to find the good middles and negotiate the difficult compromises that matter so together the stakeholders can build effective programs that have a long lasting impact for those counting on us to support and honor their choices in having a good life. Seriously!

My last editorial was posted in April 2017 and some have asked why I have been silent for the past 16 months. I chose to pause for two reasons. First, I needed time to reflect on the possibility that my perspective had become as unreasonable as the extremists I was criticizing. That many others continued to call for honoring an individual’s choice validated that my declarations were not unreasonable. Second, I hoped that others trying to collaborate with the Disability Services Division (DSD) would be more productive with my silence. It was not and we lost ground to an agency without genuine purpose or leadership. So, over the next few months I will be sharing my thoughts on the following issues:

The genuinely informed decision by DSD to impose 7% rate cuts;
The ill-advised choice by DSD to implement the new employment waivers;
The real reason DSD wants to redesign DT&H services;
The fallacy of revising the need determination process; and
The further dilution of the Section 511 process.

I am proud to be a member of the Minnesota Organization of Habilitation and Rehabilitation (MOHR) because we have a shared mission and care about each program’s unique ability to serve those with I/DD within the norms of their local communities. As providers we understand that it is normal to be abnormal and have come to expect that each person comes to us with special gifts. We do not enter a relationship with them with the idea that we are going to change them and do not have a mold for which we try and fit people in. Instead we try to figure out how to safely get them from one place to another, how not to allow anxieties to take control, and to understand their wants and needs when they communicate in unconventional ways. We get rid of the pressure on them to change and find the great gifts that make them who they are. The work we put into understanding and helping them overcome challenges forces us to open our minds and look at things differently. We find better ways to ambulate, communicate, initiate, and achieve our “best outcomes” not only within our four walls but also to creatively serve people at home, at work, and in the community. Put simply, we strive to do our part in providing a “good life” to those who choose our services.

So to the DSD leadership, Employment First zealots, MnAPSE idealists, and ICI theorists – I am back and there is nothing quite as liberating as pursing something for the greater good. To that end, know that I will do what I can to ensure that Minnesota citizens with I/DD have genuine informed choice that is honored and funded by State.

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.

 

Email Newsletter icon, E-mail Newsletter icon, Email List icon, E-mail List icon Sign up for our mailing list
For Email Marketing you can trust

 

 


charitiesreview