VIRTUAL INSTITUTIONS

As you read the following, I ask that you allow this “old dog” to use general concepts, outdated verbiage, and approximate timeframes in telling this story of how I came to work in the field of human services and how it relates to the issues we are facing at the legislature today.

In the winter of 1978, my friend John Selvog drove a bus route in St. Cloud, MN that transported children with "mental retardation" from their family homes to a segregated school and back. As Christmas approached John realized it was unlikely that these kids would see Santa at the mall like their peers. Together we convinced the Dayton’s Department Store to donate candy and smalls gifts for each of the kids and to loan us their Santa suit for a night of visits. With me suited up as Santa, John drove us to each of the kid’s homes where we delivered the gifts to the delight of each family and the kids got to hug Santa and whisper their gift wishes. Something resonated with me that evening and I dropped out of college for the spring semester so I could volunteer as a teacher’s assistant at the segregated school the kids attended.

Returning to St. Cloud State in the fall of 1979 I declared my major as a Recreation Therapist which required two more semesters and a 400 hour volunteer internship. Getting married in November of that year my internship options were limited as my wife Mary had a full-time job in St. Cloud that we needed until I graduated. I was fortunate to be accepted for an internship at Brainerd State Hospital and began in May of 1980 under the supervision of Blaine Church. At the time we only had one car which Mary needed for her job in St. Cloud. As a result, I hitch-hiked every Sunday afternoon from St. Cloud to Brainerd, lived in a basement classroom in building #7, and hitch-hiked back to St. Cloud every Friday afternoon for 10 weeks. Without a car, I literally lived and worked 24/7 in building #7 unless we took clients out into the community. From this experience I got a memorable lesson on the reality of “institutional retardation”.

I graduated in August of 1980 and we moved to the Twin Cities where I was hired as a Recreation Therapist at the Greenbrier Home in East St. Paul. After a few years in this position I switched to an administrative track and eventually became the Administrator in 1984. Greenbrier was an Intermediate Care Facility for Mental Retardation (ICF/MR) for 172 men, many of which attended Merrick, Inc. Despite the best of intentions, Brainerd State Hospital and Greenbrier Home were both institutions. In many cases institutions are good things in that they are an organization, establishment, foundation, society, or the like devoted to the promotion of a particular cause or program, especially one of public, educational, or charitable character. However, they are not good homes in any sense of the word.

In the early 1980’s Dr. Warren H. Bock was the interim Disability Services Director for the MN Department of Human Services (DHS) and hired Cindie Becker from Washington State for the sole purpose of getting waivered services approved in Minnesota. Together they submitted the federal application, wrote state statute, and issued requests for proposals to the provider community. After a federal ICF/MR audit, and realizing the future of waivered services, in collaboration with Ramsey County I led an effort to downsize Greenbrier by moving all of the residents into Supported Living Services (SLS) group homes. Concurrently, I formed a company called Focus Homes, Inc., that became an SLS provider to many of these men and eventually served more than 200 people in 65 homes throughout 12 counties. In 1990 I joined Dr. Bock in his consulting practice until I was hired as the Executive Director of Merrick, Inc., in 1998.

From my view, the primary objective of the “waiver” was to permit the state to offer more flexible services with almost a single requirement that it only had to cost less than the existing institutional option. For more than 25 years Minnesota has expanded its waiver options, reduced the use of institutional programs, and discharged nearly every citizen with a developmental or intellectual disability from the state hospital system. Unfortunately, for the past few years the Centers for Medicare & Medicaid Services (CMS) and DHS have been pushing to move from a social service to a medical service model; and the proposed Disability Waiver Rate System (DWRS) is just one element of this impending change. Having been part of the DWRS workgroup process since 2009, it is my feeling that the new rate frameworks will result in the waiver becoming an institutional service. Apparently we believe that somehow we can annually assess a client’s needs across the domains of communication, behavior, medical, & mental health to prescribe supports needed in the residential, day, and transportation programs. Like you, I have had to fill out those health history questionnaires whenever I see a new clinician and no matter the length or specificity they never really capture my entire life. How is it we can precisely capture the often complex needs of the folks we serve and when was the last time you heard a client say they need a 1:6 staff to client ratio? Moreover, providers will not be able to offer services for less having to accept the rate calculated. Remember George Corporal and the Glass Service Company? When insurance companies decided to pay a flat rate for glass replacement, George offered a box of steaks to customers because he couldn’t compete on price. If we cannot negotiate our rates will we have to offer extras like movie tickets, dinner coupons, and event passes to attract clients to our programs?

I agreed to participate on the DWRS workgroups hoping that I could help influence a good outcome. That did not happen in my opinion. What is being proposed is based on a myth that recipients have a condition, on a finite list, that can be treated with a prescribed course of action, in the same manner by all providers, at a known cost, and the person will get what they need for a basic quality life. It is medical model that just won’t work and if the consequences weren’t so serious it would be silly. DHS reports that in SFY ’10 it spent approximately $160 million on DT&H program and transportation services for almost 16,000 recipients. According to Bert Blyleven’s California math that is $10,000 per client, about $42 a day, or $7 an hour for 6 hours of program services including transportation to and from the program. So, using the bell curve let’s start with $42 as the median per diem, adjust up/down by the standard deviations until the budget is spent, and then allocate that amount to clients in an annual budget to determine what supports they want to purchase so they can discuss options with a number of providers. This won’t happen because DHS believes CMS won’t allow waivers to be this individual and flexible. Still, policymakers need to remember that every penny of the federal financial participation given to Minnesota comes from taxes our citizens pay to the federal government and someone with State authority needs to have the moxie to say enough is enough and we are going to do what is right and practical. We are about to implement a rate framework that is a virtual checklist institutionalizing how funding is approved and we should know by now that funding has everything to do with the flexibility of services. At this point I don’t think we can stop the rate framework train from leaving the station. However, over the next three to four years of implementation we can push back to ensure that the assessment used to inform the rate framework is a person-centered process and work with advocates to get the funding in the hands of the recipients so they can decide both the services and providers they want.

EXPECTING MORE

The 2013 Legislative Session began on Tuesday, January 8. It is the first year of the biennium which means the primary focus will be setting the biennial budget. The November election brought big changes in Minnesota state government. For the first time in 22 years, the Senate, House, and Governor’s office will all be controlled by the DFL. The election also brought 65 newly elected members of which nineteen have previously served in the legislature. The DFL has targeted balancing the budget, jobs creation, tax reform, and education as their top priorities. In the area of health care - health reform and adopting legislation to implement the health insurance exchange will be at the top of the list.

To better understand the legislative issues from the disability community perspective I reviewed the websites for The Arc of MN, Association of MN Counties, Association for Residential Resources in MN, Care Providers of MN, MN Consortium for Citizens with Disabilities, MN Council of Nonprofits; and the MN Day Activity Center Association. Some common themes that emerged include:

• Support a balanced approach to the 2014-2015 budget;
• Enact a Cost of Living Adjustment (COLA) also known as a rate increase;
• Fund the health insurance exchange requirements and other Affordable Care Act mandates;
• Monitor Medicaid Reform initiatives coming from the Department of Human Services;
• Modernize and strengthen Minnesota’s election system while increasing access to voting;
• Ensure rate frameworks preserve the ability of organizations to provide critical disability services; and
• Promote funding strategies that assure people with disabilities live at the maximum level of independence.

The important issues that Merrick will be tracking this session include the following:

1. Encourage stakeholders to: (i) have the definition of DT&H services updated to reflect current practices and deemed an “essential service” (thereby mandated for payment during a government shutdown); and (ii) reestablish rules prohibiting any licensed provider from having 24-hour control of a vulnerable adult (sunshine rule) as part of finalizing the new licensing rule 245D.

2. Support MnDACA’s efforts to: (i) work with DHS on the final values for the new rate frameworks and implementation plan; (ii) repeal the 1.67% rate cut scheduled for 7/1/13 – 12/31/13 because CMS did not approve the state’s early implementation of the new nursing facility level of care (NFLOC) criteria; and (iii) eliminate the $2.55 “family out-of-pocket” fee being applied to MA providers.

3. Revise MS 174.30 (Subd 1)(c) to exclude vendors from STS regulations that exclusively provides transportation services to individuals enrolled in licensed day programs, including adult day care, family adult day care, day treatment and habilitation, prevocational services, and structured day services; and transports 15 or fewer persons, including passengers and the driver.

4. Oppose any legislation that does not affirm the service recipient’s choice as primary and/or restricts voting rights for citizens with a disability.

With the change in party control there has been a complete changeover in leadership. The Senate DFL has elected Senator Tom Bakk as the Majority Leader and he has served previously as the Minority Leader. Senator David Hann was elected as the Minority Leader, previously served as the Health and Human Services Finance chair, and is a friend to the disability community. Senator Tony Lourey will chair the Health and Human Services Finance Committee and Senator Kathy Sheran will chair the policy committee. Both are familiar with disability issues. In the House, Representative Paul Thissen was elected as Speaker and previously chaired the Health Policy committee. Representative Erin Murphy was elected Majority Leader and has served on the Health and Human Services Committee. Finally, the House Republicans have elected Representative Kurt Daudt as the Minority Leader and this is only his second term. Representative Tom Huntley will chair the House Health and Human Services Finance Committee and Representative Tina Liebling will chair the Health Policy Committee.

The November forecast projected another deficit of $1.1 billion for the coming biennium of FY2014-15. However, the current biennium ended with a positive balance of $1.3 billion which under current law was used to buy back the school payment shift. The DFL leadership and Governor Dayton are calling for a balanced approach in dealing with the deficit, meaning both additional revenue and budget cuts. The Governor has said that he will push his proposal to tax the top 2% of income earners. The Legislature has not totally embraced that proposal and has indicated an interest in tax reform that might close loopholes and/or expand the sales tax to cover more items, (i.e. clothing). The talk of additional revenue has triggered a lot of “pent up” demand for increased spending so DFL legislators are trying to lower expectations. That “pent up” demand is being felt by disability providers as rates have been cut to balance the budget. In fact, there has not been a COLA (cost of living adjustment) since 2008 and many services have had rates cut since then to balance the budget.

As evidenced by the recent election, citizens have grown weary of partisan dogma intending to restrict personal choice and political posturing on issues important to the wellbeing of our communities. It’s clear that our political and civic leaders are failing us - and it is our fault. As Sean Kershaw, Executive Director of the Citizens League, states in his recent Minnpost article – “I’m also tired of the pity-card being played by people like me who know better: who have enough time and energy and resources around them to do something differently; who recognize the silliness of whining and civic victimhood; and who realize that our leadership is a reflection of all of us and of a civic culture that has become too passive and a political culture that has become too toxic”. He goes on to discuss their new Quantum Civics program that sounds very intriguing and something to consider. Still it comes down to every citizen expecting that our civic and political leaders have a broader vision of what is good for our communities and the courage to find innovative strategies to confront the challenges we face. We have enough money, compassion, and intelligence to make Minnesota a better place for its citizens and we need to hold legislators in the 2013 session accountable for making progress to that end.

UNCOMFORTABLE

For many years, only five percent of the clients we served were over the age of 55 whereas today that number is 21% and we project that number to grow to 34% within the next five to 10 years. We also realized a need for a distinct service option for adults with intellectual or developmental disabilities (I/DD) that were experiencing stage 1 or 2 Alzheimer’s/dementia. Early research indicates that 100% of adults with Down syndrome will eventually experience signs of Alzheimer’s/dementia and that they may experience an early onset in their mid-thirties or forties. Of the 65 clients with Down syndrome we currently serve, 18 have already been diagnosed with Alzheimer’s/dementia. Recent studies have also suggested a strong correlation between a long history of psychotropic medications - a common occurrence among older adults with I/DD - and early onset of Alzheimer’s/dementia. It also seems that clients that lived in institutions for decades are similarly at higher risk than their aging peers for early onset Alzheimer’s/dementia due to the lack of positive experiences - personal relationships, photographs, pleasant memories - that would otherwise help to slow the onset of the disease.

For the last five years, we have observed a rate of newly diagnosed cases of Alzheimer’s/dementia of approximately one to three cases per year; and, over the past year alone, the rate of new diagnoses here has tripled to one case every six weeks or eight to nine new diagnoses per year. While there are both similarities and differences on how Alzheimer’s/dementia impacts persons with I/DD and their nondisabled peer group, one fact became clear to us - the steady growth in new diagnoses demanded programming to serve the unique characteristics of this population. So, on July 30, 2012, Merrick, Inc., with support from Ramsey County Community Human Services, opened its Adult Day and Memory Care Service program in North St. Paul to serve 40 clients.

Since then I have visited the program many times and always with a purpose until the other day when I went to simply observe. As usual I found the space clean, comfortable, and cozy with clients and staff loosely engaged in orchestrated chaos. On this particular day Halloween decorations were in full display and clients were involved in either a light exercise program or working on iPads. I watched as a client poured his own cup of coffee and others came in from the bus to greet their friends. It all seemed so natural and harmonious - so why was I so damn uncomfortable? Mulling over this feeling for a few days I came away with the following two reasons.

• First, I’ve known many of these clients for more than decade, some for 30 years, and to see their mental and physical health diminish is both sad and a reminder of my own fast-approaching future.

• Second, and to me most interesting, I was bothered that no one was working. Really bothered actually. In fact, everything they did had at its core an element of fun which is not found in the federal/state licensing regulations. I wondered would politicians, policymakers, and taxpayers really understand why funding this program was important.

Unfortunately, as funding is cut, I fear that this age group of citizens with I/DD will be among the first to lose services so I decided to try to develop some reasons why this type of program is so important.

1. Elderly people with I/DD, like their non-disabled peers, need and want activities that give them routines and enrich their daily lives. Otherwise, they would spend another 25 hours a week in their home with minimal support and very little social/community interactions. Would we want to stay in our homes 24/7?

2. Staying in the group home is not free as residential providers would need to schedule staff and plan for other costs. So, if these 25 hours are going to cost the taxpayer something, shouldn’t it be for life enrichment activities rather than custodial care?

3. Shouldn’t we value fun for people in the later stages of life? Isn’t fun and enjoyment something we hope for in our own retirement?

On November 13th we will be hosting an open house and ribbon cutting ceremony to celebrate the opening of this program in our new community and I feel much better prepared to share these thoughts with our guests. Nevertheless, I still have something to learn from these folks about what life enrichment and social opportunities really mean if I ever hope to enjoy my own retirement.

RESPONSE TO REAL JOBS

Jon Alexander is a respected colleague who sometimes challenges my messages. He is also the CEO of Kaposia, a supported employment and day training and habilitation provider, a co-manager of the Minnesota Employment Policy Initiative (MEPI) project, and a founding member of the MN Employment First Coalition. In the interest of full discussions leading to better outcomes, I invited him to share his thoughts on competitive employment through the Bark’s Bytes channel.

From Jon Alexander:

In 2009 and 2010, the MEPI conducted a series of listening sessions across disability groups to gather information focusing on the question, “What will it take to double the competitive employment of people with disabilities?” Over 200 individuals with disabilities, professionals, family members, and advocates participated. A series of policy briefs related to employment for people with intellectual or developmental disabilities, autism, physical disabilities, brain injuries, mental illness, deaf-blindness, or hearing loss, as well as youth in transition were presented.These policies briefs were then summarized in a final report. In the reports, the term “real jobs” was used in only one recommendation.

This recommendation pertained to students still attending school and is included below. Participants in the listening sessions used “real jobs for real pay” to clarify that they were recommending jobs similar to those secured by students without disabilities, not the types of “work experiences” available to students with disabilities as part of their school program. “Work experiences” were viewed as being developed by school personnel with the job belonging to the school program, not the individual. Listening session participants felt it was important for students with disabilities to have their own job prior to graduation to better inform their choice of employment upon leaving school.

Recommendation from one of the policy briefs: Ensure students with disabilities have real jobs for real pay while they are still attending school. There is no substitute for having a real job. Research on transition has documented that a positive correlation exists between the number of paid jobs held by youth with disabilities and their future competitive employment outcomes. A job is a powerful learning experience for a young person. It is the best way to learn about work and to start building a resume for future jobs. Students with more significant disabilities often have “work experiences” which are often unpaid, artificially created experiences that take place within the school setting or in groups in the community, rather than having real jobs while they are in school like other teenagers. While there is value in work experiences, they provide a limited opportunity for learning. There is usually no interview or selection process. Expectations are not the same as working directly for an employer for wages. In many work experiences, students are isolated from the paid workforce at the place of business, preventing them from fully experiencing the social aspects of a job. As a result, they do not learn some of the “soft” skills vital to successful employment or the direct connection and rewards of paid employment and work.

In his blog post titled, A Real Job, JWB connects the term “real jobs” with MEPI’s definition of competitive employment. MEPI does define the term “competitive employment” as “work in fully integrated settings, with or without supports, paid at prevailing wages.” We used this term because defining “employment” alone is a daunting task that is probably impossible given the differences of opinion on the issue as noted in a quote from the beginning of JWB’s post. We chose to emphasize “competitive employment” as it is the most consistently defined term and goal in statute and policy at both the state and federal level. We also typically include self-employment as part of our definition, though the quote used did not include this option.

So what’s my point?

I agree the term “real job” is one which can create at best, confusion and at worst, hard feelings. This term is used by many critics of our system who would like to see people move from low paying jobs where they work on a limited number of tasks and are paid directly by a provider into ones that are more typical of the general population, namely competitive employment. The MEPI reports however did not intend to use the term “real jobs” in the way JWB describes. In fact, the MEPI team worked hard to communicate its findings and recommendations in ways that attracted not repelled potential collaborators to its long range goal—increasing the number of Minnesotans who participate in the community workforce.

If JWB had asked whether or not MEPI established a preference of “competitive employment” to other types of employment, the answer is “yes.” We view employment that focuses on individual skills, offers market rate pay and benefits, encourages higher levels of integration, and offers capacities for employers to supervise and support their employee naturally as a preferred option to traditional practices. But valuing naturally supported competitive employment over center-based employment or other community employment like work crews or enclaves, does not equate to saying those options are not “real.”

Finally, I would like to add that there is a great deal of tension between differing sides in the on-going debate about how to improve the outcomes realized by the individuals who receive services from organizations like Merrick or Kaposia. Both sides need to do a better job of listening and communicating without the use of terms that create more rigidity in our positions. JWB and I met and discussed how we might do this on a personal level in the hopes that we can be role models to our colleagues on both sides of this debate. I’d like to thank him for this opportunity to respond to his latest editorial. ~ Jon Alexander