Introduction from the editor:
In our last issue of NADD Bulletin (November-December, 2002) we began a dialogue among NADD members and others about efforts to encourage cooperation between mental health and developmental disability systems in the various states and provinces of North America, as well as some input from other parts of the world. We continue this discussion in this issue, utilizing some of the same basic questions. Please note that some of these responses were received almost a year ago, and some situations may have changed in the interim. (We've also included a challenge to our readers at the end of the discussion.)
Has your state/province made any efforts to develop a cooperative system, or at least cooperative projects, between mental retardation/developmental disability and mental health systems to serve people who have significant psychiatric/behavioral problems as well as developmental disabilities? If so, what?
Glenn McCleese, Ohio:
I am the liaison person between our department (ODMRDD) and mental health (ODMH). We have an advisory board appointed by both Directors to address these issues. Thus far the committee has put out a Best Practice document and conducted a series of eight regional trainings around systems issues. (Editor's note: this project was also described in the last issue. See below for further information.)
Michael Schroeder, Ohio:
Thanks for the kind endorsement of our Best Practices brochure in the recent issue of NADD Bulletin. If people want to see it, we have it available for download, on the web-site of each of our state agencies: www.odmh.state.oh.us and www.odmr.state.oh.us. On the MH website, it is on the Medical Director's page.
John Holderegger, Wyoming:
Wyoming had come to grips with the issues around 1991. The developmental disabilities entity for the state took the bull by the horns so to speak, and helped my organization to create this specialty in Wyoming. One of our advantages is the rural ness of our state and the low numbers of persons with a DD/MI diagnosis. As you know, because you published it in the NADD Bulletin, we bridged a lot of gaps by utilizing the statewide telehealth network. Still, nearly ten years later, Wyoming Division of Developmental Disabilities is the lead state organization with this. They have just expanded to serve persons with acquired brain injury with a home and community-based waiver as well, because this seemed to fit their paradigm of filling the gaps in services. There has been quite a bit written and presented about Wyoming's system. Two main concepts that have worked here are: 1) clients are funded according to need; and 2) the money follows the clients.
Mr. J., eastern state:
I will attempt to briefly given my impression of _______'s collaboration efforts. The Department of Mental Health (DMH) and the Department of Disabilities and Special Needs (DDSN) are two distinct government agencies. They profess to have somewhat different missions (on who they serve). They have had more than one attempt to have collaboration. Until recently the DMH folks had specific "mental health" services for those with developmental disabilities (they shut down a DMH adult ICF/MR in late 2001). They still have adolescents with dual diagnosis treated in their hospital for C & A psychiatric services. I happened to have worked for both agencies in a capacity of behavioral psychology person-that will be another story. The recurring theme both before and after the above mentioned service changes is that significant percentage of folks who are "diagnosed" with MR have no psychiatric needs (per DMH). And, not surprisingly, those with unstable behaviors should receive services in an acute care psychiatric setting (per DDSN)-sometimes to be left without any place for return placement (per DMH). The two agencies seemed to be talking about different situations many times-probably reflecting their respective traditional treatment philosophies (medical model vs. a learning/developmental model).
I should point out that a number of ideas which seem to have promise have not evolved toward fruition. Our state is having a fiscal crisis. The respective budgets for both agencies have seen significant cuts, especially DMH, which does serve a much larger constituency. Consistent with the whole nation, there has been push to keep folks in community settings and the resources do not seem to have been designed into the community support systems (either for DMH or DDSN). Hence, we are having psychiatric patients (both with and without MR) stay for days on end in emergency rooms, waiting for placement.
My company is one of a few who now contract with DDSN to run special programs-"high management group homes--." We have taken tough to place MR clients, all of whom have an Axis I DSM-IV diagnosis from both DDSN and DMH. We have 40 living in community settings in one metropolitan community. We also have two respite beds, but a sad fact is that two relatively well-behaved males seem "stuck" in these beds-supposed to be 30-60 day placements. Most of our clients have adjusted well to our support system, better than most predicted. We have been fortunate to have a high percentage of "seasoned" staff who have much experience with problem behavior clients.
In my opinion the following would greatly enhance and facilitate what has been evolving in our state: An acute crisis stabilization unit, four to six beds, run by professionals who understand crisis stabilization for this population (MR/MI Dually Diagnosed). The setting would need to be in a secure unit-DMH has empty units in their ____________ acute care hospital. Then there needs to be a step down (in active supports) until the individual is indeed stable, possibly run from resource centers in regional offices where (parts of) the physical plants are sitting idle. The projected placement would be only 30 to 60 days, and have community effective reintegration as the prime objective-with the client needs/wants being the prime driving factor. I do not know where the funding for the latter would come from-current use of the DMH acute care beds is counter-productive. Clients sometimes return with a marked increase in sedating psychotropic medications.
To _________'s credit, they (mostly DDSN) have been trying to strongly press the system toward Positive Behavior Supports, and have been helping all facets of the system grasp Applied Behavior Analysis principles in giving our consumers effective supports. The jury is still out on the comprehensiveness and the effectiveness of these changes.
Dr. P., eastern state:
In ______________ state, many of the barriers to more effective collaboration come from an administrative split of the departments of mental health and mental retardation that may have made some sense in the 1970s but which is dysfunctional now. It may have spared our folks the loss of services that occurred when psychiatric patients were "dumped" into the streets, but at the expense of not benefiting from the expanded services available to mental patients today with similar needs-intensive case management, particularly.
There are still conceptual barriers as well-simplistic, reductionist thinking-problems are EITHER psychiatric or behavioral, treatments are EITHER pharmacological or psychosocial, etc.. Despite the efforts of pioneers like Robert Sovner and others, medical doctors are not really team players-particularly when it comes to working with psychologists. Many clinicians in the MR community are not eager to submit to the "doctor knows best" mentality that still permeates much of the mental health establishment. As far as learning to work together is concerned, I think accountability will be a driving force-if and when providers are held responsible for documenting treatment outcomes. Data will then replace dogma, and the skills of various professionals can be focused on producing measurable improvements in the quality of our clients' lives.
Desegregation possibly provides a prototype for learning to work together. Rather than trying to change attitudes, first, sometimes it is more effective to change behavior patterns, which will then drive attitude changes. By that I mean, create situations where people from both the MR and MH communities have to work together to solve common problems, perhaps through jointly funded demonstration projects, so that the stereotypes can be broken down through direct contact. This happens every once in a while in the clinic where I work, when someone from OMH slips through the crack and gets accepted for a behavioral/psychiatric evaluation. We have an opportunity then to pull together our resources and learn from each other. If consumers were really able to "purchase services"-i.e., if they truly were consumers, then they could shop around for those services that best met their needs. Then you might see more collaboration between agencies, as we learned how to work together to provide better services.
One of strong disincentives for the MR system to provide adequate psychiatric services in states like ______________, where the systems are split into two divisions, is that emergency psychiatric hospitalizations come out of the other guy's budget. We see many people in the clinic where I work who pull down at least $100,000 per year in costs associated with short-term psychiatric hospitalizations. At $1,000 per day for a bed in an in-patient unit this is not very hard to do? However, try to get policy makers to set aside this money so it can be invested upfront in preventive (or at least decent) services and they act like you are fiscally irresponsible. HELLO-the money is being spent anyway. How can we divert it from emergency room visits to community-based services?
Dagny Fidler, Iowa:
I am on the MRDD division board that is part of the Council for Exceptional Children. In the state of Iowa we have developed a wraparound service system through the Department of Human Services and other agencies, allowing money to be freed from its usual regulations for children who have significant needs for both cognitive and mental health services. The only difficult part is that we can only serve the students at the high need end. Others we are still struggling with. We have had great successes with the students for whom these services have been put in place.
Albert Pfadt, Ph.D., New York:
The New York State Developmental Disabilities Planning Council (DDPC) has announced funding for an initiative to establish "Centers for Excellence" in New York state "to train clinical, administrative, and case management/service coordination staff in the area of dual diagnosis services for persons with mental retardation/developmental disabilities and mental health disorders. " Part of this initiative will be to develop plans for disseminating information in a reference guide which has already been developed, to increase the knowledge base of the various groups identified above. This will probably be done through the typical didactic workshop format, perhaps supplemented by some of the new technology.
Mr. J., western state:
As to development of a cooperative system or cooperative projects, nothing has been done that has been felt out in the real world. _________ has, as a cost cutting move, put both MR and MH services under the same administrator, in at least some of the seven regions of the state. However, I have observed no changes in procedure as a result of this administrative change, at least in my own region. (Because I work in only one region, most of my comments will relate to only part of the state.)
The MR and MH systems continue to operate under two entirely different sets of regulations. Parents and service recipients still have to deal with two different sets of bureaucrats to obtain services. _________ has a far more generous outpatient system for children's mental health than for adults (both are still among the least generous in the nation, but we do more for kids than for adults). Similar distinctions are made in the MR system, although they are harder to conceptualize, because of the availability of public school services for children. It is not unusual for children with dual diagnoses to transfer between systems when they turn 18, which is problematic for many reasons. This leaves a three-year "hole" in the system, for practical purposes.
The major barriers to working out service delivery issues seem to be inertia and money. Folks with developmental disability are not seen as benefiting from therapy, as they are not going to be "cured." As a result, the state's reimbursement rates for the two programs are wildly divergent. For example, services for developmental disability (DDA services) are reimbursed at about $21 per hour. Psycho-social rehabilitation services for children with certain Axis 1 mental health diagnoses are reimbursed at about $45 per hour. The main difference between the two programs is that DDA staff need only a high school education, while PSR staff must hold a bachelor's degree. This difference is, of course, driven by the regulations. Why, many people ask, do folks with DD not need staff with the same level of training as do those with MH diagnoses? It's a mystery.
(In our state) we tend to pay far more attention to money and property than to people. We are also a very business oriented state. Kids with MH, with proper treatment, may grow up to be "productive." This is far less likely with children with MR. This is not just my cynicism-I have actually had this conversation with two different state legislators, who were not shy about expressing this opinion.
Ms. F., western state:
I work in a system of care, advocating on behalf of foster care children, who have been estimated with a developmental delay prevalence of 49 to 61% and with a mental health disorder prevalence of 35 to 85 percent. A high proportion of those we work with in my county also have been prenatally exposed either to alcohol or methamphetamine, or both, with attendant problems. We have a terrible time 1) accessing MH services (_________ had to be sued to get it to supply the state share of MH EPSDT Medicaid); 2) accessing DD services (__________ has a system of regional non-profit agencies accountable to very few , it seems).
Mr. B., eastern state:
Here in ___________ I personally (on behalf of the Department of Mental Health) have attempted for the last seven years to serve as a bridge between the two systems. In a nutshell, the MR/DD folks make a great show of appearing to collaborate, but in the final analysis it is all lip service. For example, the first three years I was officially employed as the liaison between the two agencies. The agreement was that the MR/DD agency was to pay half of my salary for my service. They never paid a dime for the entire three years. When confronted with this, they simply decided that they did not feel that the "collaborative relationship was working out." For the next four years I continued to serve as the contact person for all things MR/DD, providing consultation and training for all DMH staff across the state, and serving as the point person for MR/DD folks to call for any problems for which they needed help. They have taken advantage of turnover in leadership in our state office-our director making agreements with them (against my and our legal office's advice) in the interest of "even a bad agreement is better than one."
(Editor's note: then follows a quite honest list of things the agency did to the author personally to decrease his influence.) I am unwilling to agree to efforts which are not in the best interest of the individuals we are given to serve. The only way we have been able to get them to fulfill their responsibilities is to pay them to do it.
Kate Haller, M.D., New Jersey:
Off the top of my had I'd say yes, New Jersey has made some attempts to bridge the gap. The grant-funded program I'm in, DDC, provides mental health (as well as medical care), using psychiatrists who are on staff at Morristown Memorial, and after-hours coverage is provided by the department of psychiatry's on-call rotation, in which we participate. This has led to a good ongoing relationship between DDC and the hospital. The inpatient and crisis services have certainly become more comfortable and sophisticated about our patients over the years. I don't think this was ever spelled out as a goal in our grant, but it grew out of our overall mandate to provide quality care.
There have been at least a couple of grants from the state that have specifically aimed at improving cooperation between DD and MH services. There is one which had to do with providing advice to ERs and, I think, doing some training. I don't think it involved direct care. Also, the IDST program out of Trinitas (hospital) in Elizabeth, is funded to provide MH services to DD clients.
Dr. N., Canadian province:
This is not only an issue in the United States, but is also one of importance in Canada. I work in ___________, where there are two distinct ministries-one of which is the lead in providing residential and vocational community supports to individuals with MR. But, there is a second ministry which should be providing treatment services for individuals with mental health needs such as those with a dual diagnosis. Since this population has typically been served by the former ministry, it has been neglected from the services offered by the latter. Some colleagues of mine recently completed a study of models of service in dual diagnosis, and we came up with a few recommendations to address this historical "neglect." We've been at the table with both ministries for months now, addressing this issue with success.
Dr. L., eastern state:
(Editor's note: this correspondent was relatively recently appointed to a state-level position as a liaison between the MH and DD systems.)
It seems that more and more states are incorporating positions such as mine into state government. These seem to be quasi-clinical and quasi-policy/systems design positions. We seem to all be novices together and most comfortable with the clinical issues over the policy/system design issues. Finding the Ohio best practices report leads me to believe that there are others 'way ahead in their thinking. What do you think is the best way to network and learn from others who are ahead of me on the path?
Mary Cerreto, Ph.D., Massachusetts:
This (cooperative efforts) is a critical question in our field, and certainly one that has not promoted optimal solutions. I think the major barriers to cooperation between MR and MH are 1) funding; and 2) distinctly different models, principles, and values underpinning care and treatment. In Massachusetts any persons with mental retardation who have mental health concerns are, by statute, assigned to the Department of Mental Retardation. All residential, work, and leisure supports are therefore delivered under the long-term care model and the values of the developmental disabilities field. They use the services of the Department of Mental Health, including hospitalization, when needed as does any other person, and have ongoing relationships with psychiatrists in the community. The Department of Mental Retardation has two superb psychiatrists who understand mental retardation and mental health on retainer at all times. In addition, each of the five state Regions has an emergency team with exceptionally good relationships with the mental health services in its area.
Michael Harvey, Psy.D., Wyoming:
In Wyoming under our Medicaid waiver for individuals with developmental disabilities this essentially has become a non-issue. Consumers receive an overall funding level determined via a formula that includes a needs-based functional assessment. The consumer, their guardians or family members, and providers then convene an individual planning conference, where that team makes choices as to what services to fund and who the providers will be. In our organization that specializes in serving consumers with dual diagnosis, psychology is always involved as part of the team, and mental health needs (assessment, individual and group psychotherapy, medication management) are addressed in a comprehensive fashion. The state also funds specialized mental health assessments and consultations via a state-wide compressed video link-up as part of the waiver program. Essentially, recidivism has been reduced to almost zero, most consumers with dual diagnosis are being served in community-based settings, and costs have been lowered-and the most important aspect of the program is that consumers and their families are happier. The state has recently used the DD waiver program as a model for developing services for individuals with acquired brain injury.
Dr. D., southern state:
(Editor's note: these comments came from an individual new to NADD in 2002.)
It borders on spooky that you asked about the relationship between the MH and MR service delivery systems. Yesterday I was trading email with a person who woks for an advocacy group from people with significant mental illness (SMI) in ___________. She is helping the Department of Mental Health's Division of Community Services put the finishing touches on a grant to pilot Assertive Community Treatment in three of the state's Community Mental Health Center regions. She was saying that a lot of the individuals involved were from the MR/DD side of DMH and did not have the same perspective on many of the issues regarding outpatient treatment of individuals with SMI.
Dan Peterson, Washington (state):
I would like to agree with the idea that it might be more effective to change behaviors first, which then might impact attitudes. A federal class-action lawsuit regarding MH services to individuals with developmental disabilities was filed against the state of Washington by our state Protection and Advocacy system. The legislature allocated funding to the Division of Developmental Disabilities to use to contract with MH providers. In the past monies were allocated to the MH system to address this issue, and it was difficult to see changes resulting from the funding.
The Division of Developmental Disabilities, utilizing proviso funds, contracts directly with MH agencies to provide crisis outreach and stabilization services, assessment for enrollment in the MH system, and diversion beds to use to avert psychiatric hospitalization, or as step-down from psychiatric hospitals to aver unnecessary prolonged stays in inpatient settings. The Division of Developmental Disabilities has a natural incentive to increase access to generic services for enrolled clients. The MH system is experiencing funding cuts this budget cycle, so MH providers are more attracted to the idea of contracting with outside entities. Using financial incentives to improve access to MH services for individuals with developmental disabilities appears to be impacting the capacity of MH providers to diagnose MH conditions for these individuals.
John Jacobson, Ph.D., New York:
Some primary issues revolve around the relative unavailability in many areas of child psychiatrists, who, like pediatricians, are somewhat more likely to include people with MR in their caseloads than are practitioners that serve adults. Much the same picture is seen in psychology, in the sense that it may not be readily apparent in a field like MR/DD which has a lifespan perspective that a small minority of clinicians specialize in child psychology.
Compounding this is the issue of clinician knowledge or uncertainty about diagnostic and intervention practices that are suited to this population. In NY the DD Council funded the development of cross-training material, and has contracted for cross-training regionally throughout the state. The purpose of the training is to increase clinician familiarity and comfort in serving these people, and promote basic relevant knowledge. In NY there are people in the central offices of both OMRDD and OMH that are designated liaisons for these issues, as well.
Ann Poindexter, M.D., Arkansas:
It makes me very sad as I've read and worked through all the dialogue about what seems to be working and what seems to be not working to report that as far as I have been able to find out, in my own state nothing whatsoever seems to be going on between the mental retardation and mental health systems, despite those systems being combined under one umbrella agency. Perhaps we as a state will come to our senses some day!
Have you developed any cooperative programs to specifically serve individuals with "dual diagnosis" who are involved in the criminal justice system, and what specific resources do you think your state/province needs to improve cooperative services for these individuals?
Mr. J., western state:
The criminal justice system sends folks with DD who have been determined incompetent to stand to trial to _________ State School and Hospital, or to the local health and welfare regions, for competency training. They also "sentence" folks with DD to the loving care of the Department of Health and Welfare.
We need secure treatment centers for sex offenders with DD. With regard to cooperation with the health and welfare regions, we need a specific mandate to do so. For example, in my region, both exist in the same building-they need only cross from one wing to the other, but do not do so, for whatever reasons.
Now for our Challenge:
(Editor's note: I am personally offering a prize to the individual with the response to each of the following questions that I consider the most complete and succinct:
1.What would an ideal cooperative program between MR and MH systems look like (200 words or less)? (Submission deadline March 1, 2003)
2.What would be the best plan to achieve this ideal program (200 words or less)? (Submission deadline March 1, 2003)
There really will be a prize.)