Bark’s Bytes #1 | What’s First

Most often we are told that between 2% and 4% of the general population has a developmental disability (DD).  Applied to the most recent census, that results in approximately 103,000 to 206,000 people with DD living in the State of Minnesota.  In 2005, DHS reported an unduplicated count of 28,833 recipients in the Home & Community Based Service (HCBS) waivers (CADI, CAC, TBI, MR/DD) and Medicaid (MA) program (ICFs/MR); and 12,524 unduplicated recipients in Day Training & Habilitation (DT&H) programs.  If 3% of the state’s population has DD, it follows that only 18.7% of them are receiving HCBS or MA services and only 8.1% receive DT&H services.  Said another way, at least 81.3% of our citizens with DD live without HCBS or MA services and 91.9% either work in typical jobs, are in school, choose not to work, or have retired.  While I do not accept the report’s implication that clients of DT&H programs are under- or un-employed, even if that is one’s opinion, 8.1% is a much different number than the range of 60-70% cited in the report.  It is time to stop using misleading statistics that only engender arguments and never produce action; and leaders within our industry should spend their time meeting the wage expectations of those they support and not concern themselves with unemployment statistics that mean nothing to those we serve.

The “real need” is not to reform the vision and goals driving Minnesota’s educational and rehabilitation systems as called for in the report.  Rather, the real action is to practice genuine person-centered planning for every recipient of HCBS or MA services.  It is not “Employment First” as declared in the report.  Rather, it is “Self-Determination First” as asserted by self-advocates.  As Burton Blatt once said, “Why does reformation always result in sameness?”  Systems are systems and you cannot reform them to be individualized.  Instead, all system initiatives should be focused on minimizing itself to operate within the background with person-centered planning operating in the foreground.  I submit that action happens only at the point of service delivery and, in this case, only through self-determination.

The report asks the question – “Why shouldn’t Minnesotans with significant disabilities live and enjoy their lives as their peers do?”  Who are these peers and, if you can identify them, why do we assume that people with DD want to use them as the benchmark in evaluating how much they enjoy their lives?  I am not sure why being a person with DD is still so undesirable that we need to make them more like us as though us all “enjoy our lives?”  A de-facto reality is that you cannot accurately compare the experiences of someone receiving HCBS or MA services to the general population, so let’s stop trying.  Instead, let’s assist the individuals we support to define their own quality of life and then creatively use our resources to make steady progress in realizing their hopes and dreams.

I understand why some portray the DD cause as a human rights issue.  I respectfully disagree.  A generic definition of human rights would be freedom from arbitrary interference or restriction by government and the term often suggests that the civil liberties or civil rights of an individual or group have not been recognized.  Civil liberties typically refers to fundamental individual rights, such as freedom of speech and religion, protected by law against unwarranted governmental or other interference; with civil rights most often thought of as rights belonging to an individual by virtue of citizenship, especially the fundamental freedoms and privileges guaranteed by the 13th and 14th Amendments to the U.S. Constitution.  With regard to people with DD, while government may not always provide supports and services in the manner preferred by a specific individual or group, government action can hardly be described as interference or restriction.  Moreover, government funds many of the agencies whose sole purpose is to advocate for people with DD.  Instead, we have what some describe as a social change movement that could be defined as an effort to change public expectations on a particular issue.  The report seems to understand this concept as it states that “Changing public expectations is the engine of social change.”  However, the report focuses on just an element of a person’s life – that being employment – whereas I believe we need to focus on the whole person by ensuring that each person with DD has the greatest degree of self-determination they desire to control.

I agree with the report that work is fundamental to adulthood and quality of life, that working age adults with DD should be expected to work, and that our system should have an opt-out versus an opt-in feature when it comes to work.  And, with two edits, I agree with the following statement in the report – “Minnesota can move forward and make historic changes leading to increased job placement and integrated employment in the workforce as a desirable option for all youth and working age adults with disabilities.”  Still, work means more than integrated employment in the workforce and work is not the only valued contribution that people with DD can make to their communities.  So, if a person with DD chooses to attend a post-secondary school, volunteer, participate in habilitation activities, work part-time, or retire before they die – why is this considered a negative outcome?  The SSA definition of disability requires that a recipient is “unable to engage in any substantial gainful activity…” presuming, it seems, that most everyone in the HCBS and MA program requires long-term support.  Let’s be honest and recognize that economic self-sufficiency is an unachievable goal for most recipients of HCBS and MA services; and expecting this becomes another failure to erode their self-esteem.  Whereas, less support is an achievable outcome that can be evaluated at least annually with the individual’s support team.

I am not a fan of the one size fits all model called for in the report, with the employment first mantra and implication that all people with disabilities should be integrated into the workforce.  With 60% of the general population having some qualified disability, what is the consensus definition of integration and why do we assume that everyone with DD is willing to accept what can be a stressful situation?  Minnesota enjoys a broad continuum of services offered by rehabilitation agencies, sheltered workshops, DT&H programs, and adult day services that can meet the variety of supports desired by people with DD.  Should we get better at supporting people with DD in paid, integrated employment in the non-disabled workforce?  Yes, but not to the exclusion of the desires of people with DD for other options as determined through a person-centered planning process.

The report calls for “real work at real wages” at “minimum or prevailing wages and benefits” and suggests the “removal of sub-minimum wage” work.  Let’s be clear on this point.  The issue is about economic fairness not the minimum wage (as though the minimum wage can offer economic self-sufficiency).  The special certificate used by most vocational service providers is an amendment to the Fair Labor Standards Act permitted by the U.S. Department of Labor to pay people with DD a commensurate wage based on their productivity.  It is based on the real prevailing wages of non-disabled workers completing similar real work in the local market.  Done correctly, the commensurate wage system offers the person with DD an opportunity to earn the same real wage as a non-disabled person performing the same real work.  The only time a person with DD is making less than the minimum wage is when their productivity is below the quantity needed to generate that wage.  Everything I’ve heard from self-advocates is about the opportunity to have real work and be valued members of their community.  I’ve not heard them say we want to use public dollars to subsidize our wages to create an illusion that we are valued and respected workers; or that they are willing to lose their MA benefits for a private insurance policy that is less comprehensive.  These special certificates are a good option to offer real work at real wages to people with DD and we need to focus on each individual’s work preferences and wage expectations rather than spend anymore time debating an irrelevant minimum wage issue.

In summary, I didn’t find the “consensus recommendations” in the report to be particular new or insightful; and I certainly don’t think we need to divert limited funding from client supports to a new “Training and Technical Assistance” bureaucracy.  Also, I am not inspired by the idea of Minnesota being a “leader” as I know from experience that no other state will follow our practices anymore than Minnesota will follow theirs.  The report was useful in understanding why a systems reform approach that focuses on “employment first” is not the strategy to follow.  Instead, we need a holistic approach that permits the individual to determine for themselves the support needed to have preferred housing, satisfactory work, reasonable transportation, and meaningful relationships.  To that end, politicians and bureaucrats need to minimize the system to simply determine recipient eligibility, assess service options, authorize providers, account for expenses, protect health & safety, measure quality, and get out of the way.  Professionals need to commit themselves to self-determination and genuine person-centered planning so that each client’s unique needs, expressed preferences, and informed choices are known and acted upon.  And, people with DD need to keep striving for social change.  If we listen to them, we may eventually get it right.