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: https://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: https://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?