System Change » Christiaan's Perspective

Looking Back (Part 7)

Jul 052011

After a long process, a new allocation system, called OBA, was presented as the replacement for the OASIS project. As so much discussion was had with families and providers, the finished product was eagerly anticipated. OBA was originally based on a simple mechanism- The level of support that one consumer requires should be similar to another consumer with similar characteristics. As some services can be shared, the number of housemates is also a factor. With so much stakeholder input and such a simple mechanism, what could go wrong?

In October of 2010, the first indications of concerns began to surface. A quarterly bulletin was released, describing the OBA system as a combination of living situation, medical and behavioral review, and the ICAP (The same assessment that was such a concern during the OASIS allocation period). The ICAP, when released to providers after OASIS, proved to be so inaccurate that providers were asked to validate every question for every consumer. This process did not actually correct the ICAP, but just indicated whether the provider agreed or disagreed with the accuracy of each answer.

To be fair, all of this was (and is) happening in a very difficult economy. Like everywhere else, sacrifices must be made and the collective belts of providers must be tightened. Reimbursement rates were cut for many waiver-funded services. Providers understood this, and created cost-saving proposals, which were submitted by INARF (our trade association) to FSSA. Because of the friction that existed between providers and the state at this point, these proposals were looked upon with suspicion, and ultimately went nowhere.

When the January, 2011 OBA amounts were released to families and providers, the concern increased dramatically. Allocations, while not as random-seeming as the OASIS allocations had been, were still unpredictable. Provider teams, using the descriptions provided by DDRS, had estimated the “ALGO” scores in advance, based on their knowledge of the consumer. The January scores did not correspond to the estimates made by the people who served the consumers every day. Individuals that received minimal support and did not want an increased provider presence were allocated amounts that would never be used. Individuals that required, and had been getting higher levels of service found themselves without needed resources. There was a generalized fear that history was repeating itself.

As tension rose in the provider community, attitudes changed. Providers rejected every plan that the BDDS put forth, and BDDS, in turn, rejected provider suggestions. Transparency evaporated. Committees were never reconvened. Trust vanished. In short, all of us had an opportunity to work together for a solution, and we squandered it. State officials are convinced that providers are greedy, Providers are convinced that the state is unreasonable, and families are convinced that their needs don’t matter.

We stand today in the middle of the most challenging time in the history of our field. As a provider, I am seeing the lowest reimbursement in Waiver history, while the cost of service provision is at its highest. The State must reduce spending to be responsible, but is faced with every single entity stating that they cannot survive on reduced spending. There has been such an outcry from all corners that the Federal government is scrutinizing every decision made in Indiana by the state government and service providers. Families are just fed up, and are waiting for something new to come along.

And so concludes “Looking Back,” with a clear indication that we must begin looking forward. If we (collectively) decide that the history ends now, we have all failed. It is time to take a breath and count to 10. We all know that the current system is not sustainable.

Perhaps I am being naive, but I can envision the next chapter as a fundamental change in how we address the problem. With a few acknowledgements and concessions, we can create a model that actually does as it is intended. It will require a few things, though:

The State

The state must acknowledge that any system that keeps itself hidden will lead to distrust. It must be open to input from stakeholders, and be prepared to publicly address concerns and revise things that are clearly not working correctly. It must stop pretending that the solution to meeting the needs of someone who needs constant, vigilant supervision is to authorize most of a full day and then ask the provider to find a roommate.

Providers

Providers must stop insisting that any reduction, to any service, to any consumer, is a crisis. We have a tendency to appeal any reduction, even if it is to a service that the consumer never uses. We need to stop working under the assumption that the State is deliberately trying to make things difficult, and admit that, just like us, they are trying to make 5 pounds of resources fill a 10 pound bag.

Families

Families need to be more active in the process, instead of waiting for Providers and the State to work things out. The ARC of Indiana makes a very good point when it says that families need to use what they need instead of demanding everything and then letting the provider and the state fight it out.

All in all, we will be judged on the decisions we make now. This time can be remembered as when we reversed course, opened up micro-institutions, accepted the lowest common denominator as the service we would render, and ultimately made decisions based on fear and finance. Or, this could be remembered as the time when we grew up, laid all of the cards on the table, and developed an efficient and transparent method of delivering high quality, efficient services to individuals who need them.

The solution cannot be developed unilaterally. Only candid discussion will result in an effective solution. Each entity, individually has a third of the equation, and must be willing to share it with complete honesty.

From the State: How much money is available for the provision of services to people with disabilities.

From Providers: How much does service provision cost? What would each unit of service cost on its own, without using it to subsidize other services or being subsidized itself?

From families: What do you really need? Ignore the fear of losing what you don’t use or trying to anticipate the potential for future needs. What support, at a minimum, do you need right now for health and safety?

Within these three facts lies a sustainable and effective plan for service delivery. Let’s do this.

Looking Back (Part 6)

Professional No Responses »

Jun 212011

Perhaps one of the most entertaining developments in waiver history was the creation of IPMG’s “Insync” provider selection tool. The purpose of this was to allow consumers to review provider qualifications and make a decision without consulting the long provider-list that offered no real information about providers. It also promised to connect providers with consumers by showing consumers which providers wanted to serve them.

The actual product, a generic database product from Intuit, left much to be desired. The Insync system managed to give providers almost no information at all about the consumer (confidentiality) while asking the provider to indicate how interested they are in providing services. This is done, literally, by rating their interest on a scale from “not interested” through “very interested”. A common joke among providers is openly wondering how many referrals a provider would get if they were “somewhat interested” in serving an individual. The Insync system lost much of its support when providers found out that if there was not a minimum number of interested providers, the system was scrapped and the pick-list was used. Regardless, providers must use whatever tools are available, so Insync is still monitored on a daily basis, even though (in my area) there have been no consumers listed in months.

There was quite a bit of concern in the provider community at the beginning of 2008. In spite of the assurance that stakeholder input would be a key component of the development of the new waiver system, the absence of information was so profound that the rumor mill took over. Providers began sending people to provider meetings in the “pilot” regions of the state. Any gap in information was quickly filled by speculation. Families were terrified that services that they depended upon would be gone forever. When they called their local ARC affiliates for information, they were told that there was no information to give.

A letter was released by the DDRS director in the middle of this confusion, to assure families and providers who were concerned that sheltered work was being limited that this was not the case. The letter expressed anger at providers for creating this rumor, openly accusing them of inventing it to frighten families. The self-congratulatory letter also reminded the recipients that DDRS was completely open and inclusive of ideas from stakeholders. Finally, it listed mutual accomplishments that included the creation of a DSP training program, crisis services, outreach services, and improvements to the case management system. As of this posting, all of these accomplishments have been eliminated.

In September of 2008, after many cost reports, questions, and revisions, the Day Services definitions and rates were released. Originally, the state wished to use the same methodology for day services as it did for residential- using the staff hour as the unit of reimbursement, with the cost split between all consumers present with the DSP at the time of the billing. Providers objected, as such a system would reduce consumer choice by forcing all consumers in a group to stay with that group. The state responded by dividing the staff/hour unit of service into discrete, ratio-based units of service. This greatly increased the consumers’ ability to choose different activities and services, but required providers to track ratios every 15 minutes to determine the appropriate billing code. The increased documentation and tracking required to verify that a service was appropriately billed let to significant cost increases in providing the service.

2009 Marked the official launch of the short-lived OASIS program. From the moment that the first allocations were released, it was apparent that something was very, very wrong. The “black box,” or secret formula for assigning dollars based on consumer need seemed to be operating on an entirely different wavelength than what was expected by families, providers, and even employees of the state. Large swings were noted, awarding huge increases in authorizations to people who did not need them and cutting services to individuals who could not safely live with such a reduction. After a few weeks of embarrassing anecdotes from families and heartfelt letters from providers and advocates, OASIS was frozen by the secretary of FSSA, pending investigation into the methodology of the allocation method. March or 2009 locked in authorizations at the previous year’s amounts, but continued to roll forward with the Uniform Rate Methodology that was based on the OASIS allocation method. The result was a hybrid of old allocations and new ways to bill services. In short, it was a system that would limp along until something better came along.

“Something better” did not come along for quite a while. The complications of uniform rate methodology and ratio-based billing added significant costs to service delivery, while the revenue side of the equation remained in limbo. Agencies, Families, and consumers agreed then, as now, that there must be an objective system for allocating resources. Even with all of the challenges to date, there is no other rational solution. A transparent, logical, and reliable system that is understood and held valid by all stakeholders is certainly worth the wait for its development.

And wait we did. There has been any number of advisory panels and work groups called in by DDRS to develop such a system. Candid feedback was requested and freely given. Providers and consumers met together at agencies to brainstorm and develop ideas, and these were sent to advisors to be discussed at DDRS forums. It appeared that this was going to be a mutually agreed upon plan that worked for the state, for consumers, and providers alike.

Part 7 will draw this history to a close and describe the current state of the Waiver. Until then…

Looking Back (Part 5)

Professional No Responses »

Mar 232011

While the history of the Indiana waiver system may seem chaotic and poorly thought out so far, the first portion of this history cannot hold a candle to the difficulties encountered from 2007 through now. It is in this flurry of events when consumers and providers were introduced to terms such as “ICAP,” “IPMG,” and “OASIS.”

In January, 2007, it was announced that an ICAP (Inventory for Client and Agency Planning) assessment would be given to each individual to determine an objective level of need. This would be given to 10,000 individuals during a pilot phase by Arbitre Consulting- A company contracted by Indiana to handle this massive project.

Meantime, January marked a change in residential and day services billing. The state, realizing that the system of paying providers regardless of whether or not services were provided would be causing them enormous difficulty with CMS, attempted to correct the problem by only allowing for billing on attendance days. While very tempting to providers to remind BDDS of their original concerns, most providers put most of their effort into putting together enough information to determine attendance patterns and retooling (again) to the latest model. As simply cutting revenue amounts to providers would close programs state-wide, “absenteeism factors” and other band-aids were applied to allow services to continue while a true objective allocation system and true uniform rates were developed.

Mid-2007 saw the launch of the “Pilot Project” for OASIS (the system to replace the current system with an objective method of allocation) in part of the state. Information meetings with Davis-Deshaies, Arbitre, and DDRS were scheduled to answer questions about the project. Providers meetings were scheduled separate from Family/Consumer meetings. Providers were also informed that they would be given several forms to collect cost information. As there was growing concern over the accuracy of the ICAP assessments, a helpline was developed to address these concerns as they came up.

In a May, 2007 memo, it was announced that CMS would allow a gradual phase-in of the OASIS model, with the pilot complete in 2008 and full implementation by mid-2009. This same memo also stated, for the first time, a promise that most providers and families have considered to be disingenuous at best: “Significant emphasis will be placed on gathering stakeholder input and creating a rate model and individual budget process that meet the needs of the people we serve and the providers that serve them.” It is this statement, along with the state’s refusal to disclose the mechanism for how allocations are determined, that has been central to the friction during the last few years.

From May until July, there was a flurry of confused activity. There was a rush to meet the original deadlines that were promised to CMS, and as a result, many corners were cut. A memo was sent out changing the due date for cost reports, immediately followed by one acknowledging an error in those cost reports. A policy bulletin reversed a previous memo, now stating that camp registration was not covered under waiver, but staff time was. Finally, all providers were asked to submit their most recent audited financial statements.

Finally, the rates that would be utilized for the pilot programs were released toward the end of the year. The Pilot would officially begin on January 1, 2008, for district 4 consumers. This was limited to residential, respite, and behavioral supports as well as adult foster care. Other services would begin in March. The rates, as well as the way that services were to be documented and billed were altogether new. While providers were apprehensive, assurances that everything would be subject to review based on the pilot program results made most willing to “wait and see” instead of passing judgment on the new program.

Although we did not make it to OBA in this post, my intent is to keep these sections as short and readable as I can. Part 6 will discuss the rise and fall of OASIS and uniform rate methodology. The final section will bring the history to a close as we begin talking in present tense.

Looking Back (Part 4)

Professional No Responses »

Feb 262011

Things were quiet for the first part of 2003. After the flurry of activity surrounding the waiver, case management, waiting lists, and protocols, it was a welcome break in the action. Things were certainly complicated. The tendency to clarify and re-clarify how services should be provided and billed added several layers of documentation to the process, and administrative support staff were added at most agencies to pull together the information needed to assure compliance. The cost of providing services through the waiver was going up.

Case Management was getting to be a very challenging program to operate. As the “hub” of the service wheel, it was determined that all case managers required provider numbers to bill for their services. Providers, very new to the Medicaid model, were given detailed instructions on how to bring their case managers into compliance with the new system. As case management was a critical service component, dutifully filled out the forms, reorganized, and assured that their case managers were fully trained to comply with all of the new requirements. It was important to do so, because having case management on site assured that there was a quick response to changing consumer needs. Providers heard anecdotally that so-called “Outside” case managers did not know the consumers well, and were slow to act when service changes were requested.

By 2004, it was clear that things were changing again. The numbers were in, and in spite of regular pressure to reduce costs, the added paperwork and infrastructure continued to increase costs. Providers were aggressively defending the rates they were paid, as with each added clarification from the state, expense was added for providers. CETA was eliminated altogether, and Community based individual habilitation, once the preferred service by the state under title XX, was capped at 25 hours per month.

In Mid-2004, the State announced that providers of residential services could no longer be case managers. This was a devastating prospect to providers, as all of the time and expense of hiring and training a competent case management department was wasted. Many providers, including my agency, decided to maintain their employees as internal coordinators, knowing that an outside entity could not deliver the level of service that our consumers had come to expect. This choice proved to be a good one, as the next generation of case managers (with a few notable exceptions) absolutely failed to meet consumer needs.

The term “matrix” came into use on a regular basis, with the idea of using an objective method to determine how services are authorized. Providers were (and still are) in favor of this, and were excited about the possibility of working together to develop the tools to make this concept a reality. The implementation date for “matrix” was set for June of 2005. For providers, this year of waiting for matrix was one of the most difficult we had faced. Regular communications from the state added documentation requirements and decreased revenue steadily. The Outside Case Managers were every bit as slow to respond as anticipated, and things like 15 minute documentation made service delivery an administrative nightmare. Staff were re-deployed with time built in where they were not serving consumers, so that they could complete the paperwork each day.

Of course, the launch-date in 2005 was missed, with Matrix still in the planning stages. An independent firm, called Arbitre, was employed to develop and implement an assessment tool (called ICAP) starting with residents of the Fort Wayne Developmental Center. Many an eyebrow was raised when a psychologist researched the ICAP tool and found it an unreliable assessment, but the state could not be dissuaded from using it.

This issue was moot by August 2005, however, because the governor announced a new system, called “annual contract” that would reduce the administrative burden. The Governor stated that things like 15 minute recording was an “administrative nightmare.” David Gootee was hired to manage the transition to this system.

Providers were very concerned about the annual plan model. First, it combined many elements that were separately billable into a single rate. Providers that had, for example, hired an extensive nursing staff to provide healthcare coordination, found themselves with staff that were no longer reimbursable. They became “the cost of doing business.” Also, there was an obvious problem with the blending of many services into one rate- providers would no longer be able to show the connection between service delivery and outcomes, a known CMS issue.

These concerns fell on deaf ears, however, and the annual contract plan launched- without the matrix tool, and without a way for providers to justify service levels. Most providers continued to document services in units, because we were sure that this information would be demanded once the annual rate idea fell out of favor. Again, we were right.

And so began the per diem billing methodology, and the changing of the service model to meet the new service definition. This model was stable for a while, and in spite of our fears, providers changed almost every aspect of service delivery to meet the requirements of the new model.

The Per Diem billing was in place for a while, and things began to look up- like there may be a stable period to focus on best practices.

Next time, we will discuss the fall of the per diem, the reestablishment of 15 minute units, OASIS, and finally OBA. Talk to you then…

Looking Back (Part III)

Professional 1 Response »

Jan 232011

By May of 2002, it was obvious that there was a problem with the waiver. The administration had been sure that people would flock to the new waivers in droves, once the new services were announced. They were wrong.

The existing system was simple and easy to understand. There were services that consumers needed, and they were delivered by providers that were funded by the state. The waiver was a different animal altogether. As both providers and state officials tried to explain the new system, the message got buried in the complexity. Families preferred not to know the details- only that their loved one was taken care of and happy.

Memos to providers from the state began to get more desperate. Providers were told that funding was in jeopardy. They were told that if they did not convince families to move to the waiver, they would not be paid for the services they provided. Families were informed that the current system rarely provided more service than Medicaid waiver, and that the move to waiver would give them more flexibility and would be easier. My agency, like many others, held meetings with families to discuss the benefits of the waiver program. Believing that the complexity of the system was a necessary side effect of more robust services, many providers backed the new system.

We backed it because it was a promise of stability. For years, we had struggled with the fact that when the state ran out of funds, providers were not paid. We also knew that there were many people that could not access services. Logically, if the state went from a system where it paid for everything to a system where the federal government paid for most of it, many more people would have access to the services they so desperately needed.

The next few months were a flurry of changes that I cannot wrap my head around, even with the memos in front of me. Rates were changed, several “clarifying” memos were sent out, and the language and tone of the communications from the state became almost threatening. The State was in trouble, and the federal government was taking a keen interest in Indiana affairs.

By October of 2002, providers were being informed that since state funded services were to be accessed only if there were no other funding sources available, to NOT convert an individual to the Medicaid Waiver could be considered fraud.

The waiver had become something that was not a choice, but a system that was critical to the survival of the supports that families depended upon. Provider agencies became expert in Medicaid waiver procedures, and the case managers employed by the agencies became expert in determining eligibility and navigating the juggernaut that was the Indiana Waiver Program.

At the end of the year, discussions began on identifying ways to simplify services. The director of the Bureau of Developmental Disabilities Services began talking about services being paid on a “Daily Rate” where providers were held accountable for assuring that needs were met, but no longer were bound to a specific authorization.

Part Four is in the works…

Looking Back (Part 2)

Professional No Responses »

Dec 302010

The Medicaid Waiver began to be a topic of discussion after I had been at my post for about six months. Seemingly out of the blue (from my prospective) there was a flurry of trainings, memos, and requirements that meant changing a lot of our job descriptions, programming, and systems. Prior to this time, the biggest discussion topic for providers was the 317 Plan, which paved the way for community based services and the closure of institutional settings.

One of the most interesting changes was the institution of Targeted Case Management. Under the waiver that was submitted, provider agencies with qualified staff (QMRP) were authorized to be case managers for people transitioning to the waiver. The authorization process, budgeting, and coordination of services was very complicated and time consuming, but it was also a reimbursable service. Additionally, Health Care Coordination and Transportation were to be added for agencies with qualified staff. Providers were encouraged to begin the process and convert as many individuals to the waiver as possible. A memo from the state in early October, 2001, confirmed that the waiver was approved with the new services.

As most agencies used QMRP-D (designee) individuals in social services, this would require some reorganization and potentially hiring staff who met the TCM certification requirements. A reimbursement rate increase of 9% for staff training, wages, and benefits was anticipated after negotiations with the state- an increase desperately needed to fund the increases in staffing and administrative burden that came with the new waiver.

In November of 2001, a memo from the director of the Fiscal Division filled in some blanks. First, it clarified that, in addition to the regular Medicaid hurdles, eligibility would be determined by a Developmental Disabilities Profile (DDP) of which IQ score was one of many factors. The DDP minimum score to show eligibility was set at 35. While agencies were asked to collect all of the necessary data, including DDP, the official eligibility determination could only be made by the Office of Medicaid Policy. Once found eligible, the Fiscal Division would review the proposed budget and make the final approval decision. Case managers were warned that any budget cannot cost more than ICF/MR. The memo encouraged cost-effectiveness, and suggested reminding families that savings here would open up waiver slots for other people in need. This was the first mention of a waiting list that I have been able to find relating to the DD waiver.

On December 18, 2001, two communications were sent to providers from FSSA. The first announced a 4.5% increase in reimbursement, and the other created a TCM-D (designee) position, acknowledging that there were not enough qualified QMRPs to handle the workload assigned to targeted case managers. The former, sent by the Secretary of the FSSA, noted that the original increase had indeed been set at 9%, but due to budget constraints, he had to make some sacrifices. An additional sacrifice noted in the memo was that he had to limit out-of-state travel.

These announcements resulted in another change in job description and structure. While somewhat frustrating, it was a great relief to have enough case management support available to meet the challenges ahead.

And what challenges there were! Service definitions now required 15 minute units of service, and the documentation of each one. Prevocational services were introduced, as well as necessity that the consumer must earn less than 50% of minimum wage to be served in the program. Consumers that did not meet this requirement were to be served under sheltered work. Each needed to be recorded and billed separately.

Additional clarification followed between February 2002 and April 2002. Health Care Coordination was determined to NOT be a service from which everyone could benefit. Instead, factors were identified that were to justify the need for service. Prevocational Services were clarified to require that the 50% factor was not an average, and that providers must measure productivity for every consumer, for every job, for every hour. For a busy setting, this is over 1000 separate calculations per day on top of the 15 minute documentation. More administrative support was needed to assure compliance. Service rate changes, and rounding rules were announced in late April.

The Indiana Administration was having problems of its own at this time. FSSA was depending upon the conversion to the waiver to do two things- increase community based alternatives, and to cut costs significantly. The problem was, many people did not want to move to the waiver even as they were told how much more service they could expect. The other problem was that the number of people who met the eligibility requirements and were approved for waiver were not nearly as many as anticipated.

In February of 2002, the eligibility score on the DDP was lowered from 35 to 28. Anyone who scored 28 through 34 were automatically put on the waiver, bypassing the Office of Medicaid Policy approval. In March, OMPP approval was removed entirely. Non-waiver authorization was shifted to the Bureau of Developmental Disabilities Services (BDDS) and case managers were given the authority to approve waivers on their own. The eligibility issue resolved, all that remained was to motivate individuals to choose the waiver over traditional funding.

Part III will continue the story…

Mapping a New Course- the Arc of Indiana

Professional No Responses »

Nov 102010

I had the pleasure of attending the 2010 Arc Conference yesterday. Not only was it great to reconnect with friends and to hear another John Dickerson blockbuster presentation, the magnitude of the ideas outlined by the Big Minds Group left me absolutely energized. If you have not already done so, I strongly recommend paying a visit to the Arc’s Pathways Page to get a rundown.

This is not the first that I have heard of the “Pathways to Empowerment” initiative. I have always been a fan, but I must admit that I was wondering what the ultimate call to action would be, and how it would fit into our current struggles as an industry. I am happy to report that yesterday, my enthusiasm increased dramatically.

Our dual role, as a service provider and as an Arc Chapter, has been remarkably easy most of the time. Indiana is very fortunate that in times long before me, the industry and the advocates decided to work as partners. While the Pathways initiative may be frightening in some circles, I believe that most providers, families, and advocates will ultimately see the wisdom in moving in this direction. There will be debate on many of the ideas to come, but the underlying facts will be hard to dispute:

1. We have spent an ungodly amount of time and money arguing, complaining, tweaking, negotiating, and complying with the current system. Perhaps the “system” itself needs some scrutiny.

2. The Medicaid Waiver has been a blessing and a curse.

3. The current system is the result of a lack of partnership between the state, providers, and consumers. A fusion of competing agendas is not a partnership. We need something new.

4. Some consumers have more services authorized than they have the ability to use. Others do not have nearly enough.

5. The state needs to reduce what it spends, and providers cannot reduce their expenses any more without jeopardizing health and safety.

If these things are true, then the solution cannot come from yet another iteration of the current model. It may get us by until the next time, but all of these issues will resurface over time. The Pathways approach seeks to start a much needed conversation. While providers can still be considered the core source for services, they can no longer be considered the core source for a meaningful life. This must come from a blend of family, friends, work, community service, and service providers-the places that all of us turn to for meaning.

People have been throwing around the phrase “natural support” for a long time. I think that many people, including providers and the state, interpret this as meaning “free service.” There is no such thing as free service- someone always pays, even if it is the provider itself. As John pointed out, shifting things out of a centralized rationing of limited resources and into a collaborative effort between many involved parties is where we need to be looking. Finding that place should be the basis of our discussions.

In order to make such an effort work, however, there must be a few things in place. First, there must be an adequate and immediately accessible crisis intervention system funded by the state, so that as new things are tried there is an underlying safety net. Next, providers must be allowed the flexibility to provide services based on individual consumer need- Residential Habilitation may look entirely different from one individual to the next. Finally, we must fully embrace the work-first model- we must start early, identify the talents of each individual, and assume from the start that each individual will have a place in the workforce- as an employee, a trainee, or a volunteer.

Above all, we must get these conversations going. We must take a hard look at what is broken, and decide what can be repaired and what is simply defective. Service providers are in no danger of disappearing. We provide specialized services that are not easily replaced. As the cost of providing these services is not likely to decrease, we must depend upon innovation and collaboration to fill in the gaps and work toward making the waiting list a thing of the past. I look forward to the discussions to come!

Person-Centered Puzzle

Professional 1 Response »

May 072009

Please bear with me through this scenario:

I have always been a fan of beautiful ceramics- Especially the green McCoy pieces one can find in antique stores. Part of me has always felt that I could create such objects, if only given the opportunity to practice. I could take a class, study the masters, and eventually perhaps even turn out a vase or two. As I have no innate talent in ceramics, however, it would always be a hobby at best. In fact- for me to dedicate my life to ceramics would be irresponsible, as without the aptitude it becomes merely a form of self-indulgence.

But this is precisely what we ask people with disabilities to do when the Person-Centered Planning process goes awry.

The Person-Centered movement is one of the most important changes to ever occur in our field. In retrospect, it seems impossible to believe that there was a time when service delivery was NOT based on the unique needs and desires of the individual. What else could a provider possibly base services upon?

Another key component of good service delivery is a community-based focus. Every person has the right to be a member of the community, living out his or her life with the same rights, responsibilities, and expectations as anyone else. The people we serve need assistance in some areas, but that assistance should support their life in the community, not draw attention to the ways that they may be different.

The Person-Centered Plan has slipped recently into what can more accurately be called a Dream-Centered Plan. The hopes and dreams of the individual are being identified and noted, just as they should be. The team discusses how to best support the individual to reach for these dreams occurs, just as it should. On many occasions, unfortunately, the planning process ends at this point, with the plan focused exclusively on whatever he or she has identified as a desire.

This practice is NOT person-centered or integrative. By not considering the services a person needs to increase self-sufficiency, develop skills, and secure their place in society, we are perpetuating their need for paid support. Just as it would be irresponsible for me to spend all of my time on pottery, even if I REALLY like it, it is irresponsible to create an annual service plan consisting of one or two goals such as “Go on Vacation,” “Meet the President,” or “Be in a movie.”

These dreams are important, and should be validated and accepted. Providers should assist in doing what can be done to fulfill them. Dreams are part of what make us unique, and should be celebrated as such. They should not be our only mission in life.

I can understand how this came to pass. For many years, individual desires took a back seat to what could be fit into an existing program. Realizing the failures in this practice, it was only natural for the pendulum to swing past center as corrections were made.

It is now time to look at the process again. Person-centered must refer to the whole person, and not just a few components. Desires AND needs must be identified. Outcomes are only meaningful if they mean something to the individual. Reworking and reformulating the same thing, even if it is a dream, can’t hold much meaning over time.

I don’t think that even McCoy created pottery to the exclusion of all else.

The Sheltered Workshop

Professional 3 Responses »

Apr 032009

I have been hesitant to write this post, due to the intense controversy that the topic tends to generate. Ironically, this controversy is not so heated in conversations with consumers, but tends to be a philosophical discussion between different organizations. Personally, I tend to be on the fence, as I see very good arguments on both sides. Besides, similar to the “meaningful day” issue, it is pretty presumptuous for me or anyone else without a disability to talk about what is in the best interest of another.

The argument against the workshop, obviously, is that it is not an inclusive atmosphere- that being in this environment does not allow integration into the community. The change in waiver service definitions that prohibit any specific job skills training makes the use of pre-vocational services as a stepping stone to community employment more challenging than ever.

The argument for sheltered work is mostly found in conversations with consumers who attend this service, and have done so for a long time. In multiple interviews, I hear the same thing: “I like it here.” “This is my job, why should I get another?” “My friends are here.”

So, the people directly able to choose (consumers and families) choose sheltered work as an option, even as providers and advocates work to find the most inclusive environment possible.

I had a long conversation with Mike Callahan (of customized employment fame) at the annual INARF conference, and I asked him what he thought of sheltered work. He said the problem may stem from the fact that well-meaning people will ask a transitioning person with a disability if they want to work. For people without a disability, this is never a discussion.

I don’t have any answers for the Sheltered Workshop question. I have seen some very good things happen in workshops, and very happy people working. I have seen skills developed, friendships made, and wages earned. I have seen people with and without disabilities working side by side to make quality products. I have also seen people with disabilities working in community settings who are happy, making friends, and earning a wage in an integrated setting. All people deserve to spend the day in a situation that is meaningful to them, regardless of where or what it is. I have a few thoughts, though, on what would be needed to work toward a compromise between the two opposing viewpoints.

First, addressing Mr. Callahan’s concern, transition programs must assure that all options are open, starting with post-secondary or community employment. As Indiana VRS already supports this program, these options should be the first ones on the list. Facility-based options can be discussed at parental or consumer request. As the Medicaid Waiver service definitions state, facility based employment programs should not approached as a final destination, but as needed training with the goal of community-based employment. It becomes part of a continuum that is regularly reviewed for each consumer.

In order for this to work, however, the service definition for Pre-Vocational Services would need to allow for job-specific training. That way, in following the community-based employment model, skills are taught that are in line with the consumer’s desired outcomes and specific needs. Training tracks could be utilized to prepare an individual for the job in which they plan to apply.

Finally, for any community-based training alternative, funding must be made available to support it. An individual who has multiple or significant disabilities may need job coaching for a very long time, if not indefinitely. In order to be supported individually, this will probably be costly. The bottom line, however, is that strong beliefs remain strong beliefs only, unless there are resources to put them into effect.

There are solutions to be found, certainly. These solutions will only be found, though, by open and frank discussion that does not devolve into anger. Service models change over time, but abrupt change or unsupported change are disastrous to all.

Idea

Professional No Responses »

Mar 272009

A regular source of friction is the process of quality assurance and state surveys. In the past, there was a lot of frustration over the lack of clear guidelines for surveyors on how to interpret the letter of the compliance statement. In a lot of cases, the lack of a piece of paper would significantly damage the results of a high quality program. The new BQIS, and the new survey process, is significantly improved. Providers are reporting that it is about quality and person-centeredness. I think everyone can get behind that process!

Although providers have copies of the survey instrument, and share the underlying philosophy of the survey, there is still the potential for interpretations of the process to lead to confusion or frustration. The way areound this is actually very simple: Have the QA director (or another agency representative) attend the same training at the same time as the surveyors. That way, all can benefit from the exchange of ideas and questions that arise. All parties want the same thing- an emphasis on best practices and quality services. When all are engaged in the process, and all understand the expectations, more resources can go toward innovation instead of revision.

I also believe that consumers absolutely must be a part of this process as well. Self-advocates and families generally know their rights, but not the full extent of what makes a good partner in a provider and what they should EXPECT, above and beyond personal rights assurances. With all of these pieces in place, a person with a disability knows what a provider should be doing, a provider knows what they should be doing, and the surveyor becomes a best-practice consultant.

Just a thought…

Older Entries

Christiaan's Perspective

Looking Back (Part 7)

Looking Back (Part 6)

Looking Back (Part 5)

Looking Back (Part 4)

Looking Back (Part III)

Looking Back (Part 2)

Mapping a New Course- the Arc of Indiana

Person-Centered Puzzle

The Sheltered Workshop

Idea

Categories

Archives

Links

Meta