Improving Mental Health Services
In
Small Towns and Rural Communities
In Tennessee
Over the last year or so my wife and I have been involved in the creation of “Hopeworks” the Blount County chapter of the Depression and Bipolar Support Alliance. In this process we have learned a lot about the mental health system in smaller towns in Tennessee and have discovered it is at best a system where resources simply do not meet demand. To get an initial appointment at the local mental health center in Maryville takes an 8-12 week wait and from conversations I have had with other people through out the state that is far too characteristic in the small towns of Tennessee. We have also had extensive conversations with people involved in organizations like the Tennessee Mental Health Consumers Association and NAMI and their consensus is basically the same. Providers are trying very hard, but despite their efforts there are gaps in the mental health system. In some areas there are huge gaps. Unfortunately too many people don’t just fall through the cracks. They live there.
You get some indication of the size of the problem if you talk to people in the legal field. Our jails are becoming our biggest mental health treatment centers. People who go to jail basically as a result of untreated mental health issues, experience shows go back and back again. Our courts are clogged with people who simply cannot cope with the complexities of daily life. The courts are being hampered from their real business of dealing with the criminals who should be in jail.
Many people with substance abuse issues are simply trying to medicate the misery of their daily lives. Substance abuse and jail time are intricately linked. Despite all efforts to make jail a hard experience, people who end up there because drugs or alcohol are their only way to feel better are going to keep doing the things that put them in jail.
All communities rather large or small are facing the issue of jails becoming mental health centers. Larger communities are talking about solutions like what Nashville has tried with the idea of a mental health court. The problem though is based on two related issues which are particularly true of smaller communities. First of all not enough of the people who need to get involved with the mental health system do. Secondly once they do get involved there are not enough services available to give them the help they need.
Because of budget issues throughout the state one of the issues being dealt with now is how do you provide services to people that cost more than you think you can pay to people who need them. The cost though that is rarely asked is that of not providing these services. Is it possible that in our efforts to solve a short term crisis we are active agents of our own future misery? In recent testimony in the state legislature Sita Diehl, state director for Nami, said that when the Daniels class is finally done away with there will be about 20,000 additional people in the state of Tennessee with no access to mental health care with primary mental health diagnosis. Does anyone truly doubt the chaos that will ensue when 20,000 more people with no access, even to the medication, that in most cases is indispensable to them coping with reality in a sane fashion, face the next day?
One of the major obstacles to getting people into the mental health system is the stigma attached to mental illness. This is especially true in small towns and rural areas. People are not likely to embrace the idea of “being crazy.” People do not accept labels that seem to offer only more deprivation in a life that is already hard to live. On top of this many people’s first exposure to the mental health system is less than pleasant. They may have to be coerced to get there. Once they get there they often feel like they are dehumanized and talked down to. When you are trying to deal with more people that you can, as is true in most mental health centers, it is all too easy to get into the habit of treating people as nothing more than their disorder. I have had this experience described to me by person after person with a mental illness not to think it is more than simply a little problem. Again this is not to say that providers do not try. They do. They try hard. The mental health system is filled with dedicated and skilled people. I think sometimes when you try to do too much for too long you find yourself taking short cuts that you don’t know you are taking.
People with mental illness who do not find their way into the mental health system will not simply go quietly. They will be heard from in some system. It may be the court system as it is for many. They may find their refuge in homelessness. They may find their peace in substance abuse. They will be heard from somewhere.
The other problem is that even once they get into the system they do not have access to adequate services. When my wife was diagnosed as having bipolar disorder the first thing we discovered was that there was virtually no support network in place in our community to help someone to deal with bipolar disorder. Our previous experience had been involvement in the Epilepsy Foundation and we had seen first hand the tremendous positive effect of having consistent interaction with people who were dealing with the same things we were dealing with. Based on this we contacted the Depression and Bipolar Support Alliance and we began “Hopeworks.” We have people coming from as far as 40-50 miles away simply because they have nothing in their community.
There is a tremendous amount of research that shows the value of peer based support in helping people to manage their mental illness. Research from the Depression and Bipolar Support Alliance is clear. People in support groups are much more likely to stay in treatment, and to follow the recommendations of the people who provide treatment. They are much more likely to be compliant with medication. They are less likely to have major episodes. They know more about their disorders and are thus more able to cope with the demands it places on their daily lives. People that I have met from other parts of the country are astounded at the lack of availability of support groups to the average mental health consumer. In their experience from other states these groups are an integral part of the effective delivery of mental health services. When you talk to mental health consumers who are involved in support group services on a regular basis they are clear about how much better their life has gotten with finding a support network they can be part of.
The other thing that is really clear to me from first hand experience is that the mental health system confuses many mental health consumers. They don’t know how to navigate it. Finding therapists, doctors, getting meds etc. are all major ordeals. Support groups give first hand advice from people who already to do it about how to navigate the system. Just learning what to expect in terms of medication side effects and how to deal with them is a life saver for many people.
It is unlikely that the amount of available therapists or doctors is going to increase dramatically. Most mental health centers are fighting to hold on to the funding they currently have. Part of the solution to the mental health crisis is some mechanism to help people to deal with the lack of services that so many of them find. Support groups can be essential in fulfilling this function.
One problem I mentioned before. There are just not many support groups. Communities that have support groups don’t have enough support groups and don’t reach close to enough people. The mentally ill are not just one group. They have a multiplicity of needs. People with bipolar disorder do not have the same experience as people with schizophrenia. Parents of kids with emotional illness often feel isolated, confused and blamed by the system for the problems their kids have. There is no one group that can possibly meet the needs of all. It has been a real education to me to listen to people from other states talk about the role of support groups in the states they come from.
There are several organizations like the Depression and Bipolar Support Alliance, NAMI, and the Tennessee Mental Health Consumers Association that champion the importance of support groups. Unfortunately little financing or support exists for efforts to start support groups. For example, in our case all expenses for “Hopeworks” come out of our pocket. I must earn a living and as much as I would like to give more time and effort to “Hopeworks” it can never be more than an adjunctive part of my life.
With the problems in funding and the coming cuts to TennCare the mental health system can not help but be more stretched and pressured. Gaps are going to get larger and larger and that is if everything goes well. Most services simply exist in larger population areas. It will get harder and harder to be mentally ill in small town Tennessee and have any chance of success. Support groups are without question not a cure-all. They can however for many of the reasons discussed above be a cost effective complement to the system that already exists and offer many positive outcomes to people who right now have little.
With all this being said what I would propose is this:
1. That a system of grants be developed to fund support group networks in each county in Tennessee. In extremely small counties that network might serve more than one county. The key is that mental health consumers have reasonable access to the support they need.
2. These support group networks would have multiple functions:
· Provide support groups to mental health consumers with a variety of needs that meet with a frequency they need.
· Be responsible for community education to decrease the stigma of mental illness. Have active outreaches to local businesses, churches, and schools.
· To provide a source for mental health consumers about treatment resources in their area including insurance requirements for each provider.
· To provide educational classes to help consumers learn about their disorders and what they can do about them.
· To provide consumers with no insurance information about ways to access such things as medication and other services.
· To help advocate for mental health issues in the local community.
One key element of these grants is that they would need to be large enough to pay for the salary of at least one person per county to run these programs. A support group network at this level simply is not going to be successful as a part time or volunteer effort. Volunteers can do much of the work, but a support group network on this level is a full time affair for someone.
Make no mistake things will not stay the same. They will either get better or worse. Much of what needs to happen to make things better requires large scale increases in expenditures which are simply not going to happen in the present climate. Other states show how powerful the use of widespread support groups can be. Research shows it works. Compared to the options it is remarkably cost effective.
I hope this has prompted some thoughts about this situation on your part. I look forward to hearing your reactions.