Person-Centered Puzzle

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

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

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...

Now What?

With Friday's announcement from FSSA, freezing OASIS allocations until further notice, there has been a lot of cheering and celebrating from consumers and providers alike. I must admit that I reacted in much the same way. We all must realize, however, that this is the beginning of the process, not the result.

I am still fully convinced that, even without an official requirement, uniform rates are a necessary component of any well-run system. I have no doubt that, whatever changes are made to OASIS, it will include this methodology. The dollar amounts must also be something that is predictable to the state, so that they will know how to budget and how to project expenditures into the future. This predictive system must be based on what is anticipated, however, rather than what is automatically allocated as a maximum amount that could be expended. The latest model is a good example of why this is necessary, as it dramatically increased allocations to people that have no intention of using them. These over-allocations could have been used as a pool for those who have needs beyond what their current allocation will support.

Any new system must also be flexible enough to allow consumers to maintain the supports and services that have been long-term parts of their plan. By submitting their current schedule of services, information on how often they deviate from that schedule, and if there are any preferences or needs that the consumer feels are critical, we can have a better picture of the consumer/family expectations PRIOR to the allocation decision.

Finally, an allocation system must be transparent to avoid the problems and criticisms surrounding the original OASIS model. If there have been errors in assumptions made, providers are more likely to be able to determine where those errors lie, in that they can compare specific individuals to specific assumptions over time.

Beyond that, I really have very little more in the way of ideas. Without knowing what was originally attempted, the necessary parameters, and the assumptions made, any suggestion would come from a position of ignorance. I am sure however, that any provider, consumer, guardian, or advocate would agree with me that we are willing to discuss options and provide feedback to whatever comes next.

Comments

I was informed today that several people have tried to comment, but found the procedure to do so complicated. I apologize, and believe that I have corrected the problem. I look forward to hearing from you!

CRC

Change Function

I was reading a journal the other day, and was struck by a quote defining the term "Change Function." This was defined by the moment when a perceived crisis is worse than the perceived pain of adoption. How well this relates to organizations that serve people with disabilities! As we are generally caught between the need to innovate and the need for stability, "best practice" tends to fall somewhere in the middle. Our consumers, as well as our employees, tend to be most comfortable with the maintenance of the status quo. Any change is best done slowly, and with great care that it does not undermine service quality by failing to identify an unintended consequence.

Technology is available that can greatly increase the efficiency of provider operations. Electronic documentation, timekeeping, and new models of service are available that are much better and faster for gathering information and using it effectively. Compliance with State and Federal regulations can be assured by building them into the systems themselves. More time can be spent in direct support when less time is devoted to burdensome documentation. Still, in light of this, most providers stay with paper based systems, focus on programming areas that have not changed in decades, and devote very little time to trying new approaches to service. When innovation is critical, providers tend to look for existing models that are newer than the model they currently embrace.

I think the reason for this is two-fold. First, providers have an enormous amount of rules, regulations, laws, and cultural beliefs that must be observed. If an existing system has made it through a few audits, and everyone seems OK with it, there is an enormous perceived risk in changing anything about it. When change is forced (by new regulations or beliefs) there is a tendency to change just the area in question, forcing new information into old models. The other reason to avoid updating systems, especially electronic systems, is that in recent years there have been massive shifts in billing and documentation requirements handed down by the state. There is a lot of risk in purchasing systems at high dollars that may be obsolete within months.

The one unavoidable fact of being a provider in Indiana is that the cost of providing services and the amount of needed service will continue to rise, while the available revenue to pay for it will shrink. We are indeed entering a "Change Function" period. The system must change and grow, and people must be served. It is critical that the State and providers work together to find a solution. Providers want to do the best job they can in meeting the needs of consumers, and the government is responsible for assuring prudent expenditures of taxpayer dollars. I do not see these priorities as being in conflict. The system we are transitioning into right now is clearly broken, and many providers are in danger of closing their doors. Some are responding by demanding a freeze of all change, in favor of the status quo. Others are attempting to negotiate, with little success. Most are just keeping their heads down. Here are the facts as I see them:

1. The world is changing, and the way providers do business must also change.
2. Standardized rates are absolutely necessary for a level playing field, and they must cover the expense of providing that service.
3. Providers really do more about providing services in their field than state officials. This is not meant to be an insult, but a statement of fact. An agency with a 50 year record of quality service will know how to do it better than any administration. Compare and contrast State-run institutions and community-based providers for numerous examples (of both programmatic quality and cost effectiveness).
4. Any system that adds complexity adds cost. Simplify and excel.
5. Providers will be able to identify ways to reduce costs if a system is in place long term. Innovation cannot happen is an environment that is always in "beta."
6. Providers will need time and capital to purchase and develop systems that are more efficient. This will save money in the long run, and will allow a shift in expenses from overhead to wages for DSP's.
7. Providers and the government must work together as partners to make things right. There should be discussions with known quality agencies, not just the largest ones. A positive response from a provider serving 10 counties does not balance a negative from 10 providers serving a single county. Urban and rural providers must both be polled.
8. State policy and provider expectations should not be reduced to the lowest common denominator. It is a regular event for a rule for all providers to change in response to the bad behavior of a single provider. This stifles innovation. Providers who break the rules should be called on the carpet instead of being buried in an overall environment change. To swipe a phrase from my CEO, "That is eliminating islands of excellence in favor of a sea of mediocrity."
9. There are already established service fees that are uniform in Indiana. These are set legislatively and are on the books. This is a good starting place.
10. Non-profit agency financials are public record. It is a very easy thing to verify that taxpayer dollars are being spent wisely and appropriately. By encouraging for-profit companies to be transparent with state dollars as well, there can be a true grasp of the costs of service provision, and funding mechanisms can be tailored to support them.
    

Introductions

For this initial post, the most appropriate topic to address is to answer the obvious, "Why are you doing this?"

While there are excellent resources for families and advocates through the ARC of Indiana and through Family Voices, providers generally have difficulty interacting with them. I believe that one reason for this is that the relationship between the provider and the consumer is very personal, and discussions about complicated issues tend to "muddy the waters" and make it about business. Another reason is that providers tend to respond to questions as "The Expert," and wind up lecturing instead of discussing.

It is my sincere wish that this blog will break down those barriers and begin a discussion that includes everyone: People with disabilities, providers, advocates, and those that are a combination of all of the above. We are in the middle of one of the most complex transitions I have ever encountered, and while I am designing programmatic changes, documentation issues, billing, consumer choice, and compliance with regulations, I know that the definition of a meaningful day cannot come from anywhere other than purposeful dialogue with all stakeholders. I also know that this definition will be different for all who define it.