Are the Mental Health Needs of the Developmentally Disabled Being Met?
Tierra del Sol – Model Center for People with Developmental Disabilities
I recently met Steve Miller, the Executive Director of Tierra del Sol a non profit organization that works with developmentally disabled adults in order to train and help them function better in the workplace and in life. I accepted his offer to visit their beautiful campus in Sunland, California just outside of Los Angeles.
The atmosphere seemed to me to be a mixture of a small tranquil estate and a community college. I learned that one of the beautiful buildings was once a training school for Catholic nuns that had its origin in the 1900s. In the last 15 years it has evolved into a productive training program where people with significant disabilities pursue a range of interests and training which will expand their options for participating in their local communities.
Each day about 250 of adults with moderate to severe disabilities are bussed to the campus. Each of them has their own specifically designed curriculum. I walked through a barnyard area with farm animals where some of the people will tend the animals, learning skills, which can be useful in the still vibrant farm industry in California.
Upon entering the school building, I saw a series of comfortable class rooms humming with busy interested students although this was obviously not your typical college population. There was a computer class with older but functioning computers recently donated, which connected to the Internet. There was a knowledgeable instructor called “coach” and the activities ranged from doing the simple task of connecting words with pictures to a very bright but dyslexic women who was trying to learn to write poetry. The art class which included ceramic making was an eye opener as among the busy diligent students using various media were some who were producing some outstanding drawings and paintings. The coach told me that most prefer to copy various pictures or images rather than draw from live models although they clearly bring in their own interpretations. There was one pencil drawing of an American Indian that I thought showed sensitivity and great depth of felling. I learned that Tierra del Sol maintains a renowned gallery in the community called First Street which has earned some of these artists tens of thousands of dollars in commissions.
We detoured to the kitchen which reassembled a commercial set up of a moderate size restaurant. The students under the supervision of the coach were learning the workings of the kitchen at the same time that they were preparing meals to be used at the center. Many of them would be learning relatively simple tasks but along with their diligent work ethic, this would allow them to do work and make contributions to the community.
Students Provide Volunteer Service to the Community
As I chatted with Mr. Miller and his staff I learned that nearly everyone currently served on the campus is engaged in community service – or “service learning” as colleges and universities refer to it. They will assist others to distribute food and clothing for impoverished seniors and children; care for abandoned pets, maintain community parks and assist understaffed hospitals, daycare centers, museum, libraries etc.
Many of the students move from volunteer service to wage paying employment at more than 35 private employers throughout the San Fernando Valley. Additionally their newest program, NEXUS, is currently serving more than 50 young adults by supporting their enrollment in community colleges and other mainstream post-secondary education venues. In total they serve about 500 hundred people split about 50/50 between campus based preparatory programs and actual mainstream community life endeavors.
What are the Mental Health Issues?
I was particularly interested in how the mental health needs of this population were being addressed. I was not surprised to find out that it was not easy to arrange mental health and psychiatric care for those who needed it.
People with developmental disabilities have a high prevalence of mental health problems often at 30% in many studies and can be as high as 60-67% if aggressive and disruptive challenging behavior is included.
When we consider the autism spectrum disorder, the current thinking conceptualizes it as brain dysfunction with many underlying etiologies. Mental retardation is present in 65% -85% of this group. The onset of mental illness as a secondary disorder is also a relative frequently. It is also known that persons with mental retardation, autism and other pervasive developmental disorders may exhibit co-morbid anxiety disorders, such as generalized anxiety disorder, obsessive-compulsive disorder, phobia and other anxiety symptoms at much higher rates than in the general population
Persons with developmental disabilities are more likely than the average person to have experienced abuse in their childhood which is known to contribute and complicate psychiatric disorders. There are often co-morbid medical problems which can lead to psychiatric symptoms. Furthermore medication taken for epilepsy as well as other medical conditions can cause psychiatric symptoms and complications.
Problems in Diagnosing Psychiatric Conditions in Persons
with Developmental Disabilities
Due to the nature of many developmental disabilities, there are inherent difficulties in diagnosing psychiatric disorders in this group. There are many reasons for this problem. Cognitive and communication difficulties can lead to unique modes of coping which can be mistaken for a psychiatric disorder. For example a person with such a condition might “self sooth” by talking to themselves which could easily be mistaken for a psychosis.
A person with a limited ability to communicate would not be able to provide information which would allow a mental health professional to easily make a diagnosis of a psychiatric disorder such as depression. Information such as changes in weight, sleep, feelings of sadness or even suicidal thoughts is necessary information for diagnosis and treatment. However a person with developmental disability might not be able to communicate these things. Similarly such information is required for follow-up in order to change medication or therapeutic techniques i.e. behavioral therapies could not be readily provided.
In order to make a psychiatric diagnosis in this population, develop a proper treatment plan and follow up it often requires close consultation with family, teachers and other care takers. In an environment of a program such as Tierra del Sol, the staff is often in the best position to facilitate the meetings which are necessary. They also can provide information needed for diagnosis and follow-up as well as be part of any behavioral treatment plan since they are people in the patient’s environment for most of the day.
Mental Health Services for this Group Time Consuming and Expensive
Psychiatric services are usually time sensitive. Fees are at least in part determined by the time spent with a patient. Obviously working with this population requires an enhanced time commitment. These are some of the most difficult patients to treat and often requires special expertise and as described above, the use of many collateral interactions which of course is time consuming MediCal or Medicaid or some other state insurance are often the only insurance which many patients have available to them. It is not surprising that it is difficult to find psychiatrists and other mental health professionals to provide the needed services to this population if the fee imbursement turns out to be relatively low as compared to the non disabled populations.
Now is Time to be Sure that Mental Health Care for this Group is Included
in our Health Care Programs
We are at time in history where we are reevaluating our health care system. We need to be sure that the people who are at the table in formulating our new health care plan understand all aspects of health care including psychiatric care and the delivery of this care to special populations such as those with developmental disabilities. The decisions that are going to be made will be based on cost issues as well as what is ethically and morally right. It is hard to believe that anyone would disagree that it is only right to provide needed services for those who with no fault of their own are developmentally disabled. Our society has a tradition of providing medical care for this group but appears to balk and come up short when we have to come forth with the funding needed to meet the cost of necessary mental health care. The prevailing thought is often that we don’t have an unlimited source of funding. However, if you look at the big picture, providing sufficient funding for mental health care in this population may very well in the long run be a very good investment. The result of proper outpatient treatment will prevent costly inpatient care. Psychiatric treatment which can diminish disruptive behavior or incapacitating symptoms will allow people to better participate in the type of programs described above at Tierra del Sol. This will allow many of them to be productive people doing some work or volunteering in worthwhile service. The impact reverberates on families, schools and on our entire society in a very positive manner.
I welcome your thoughts and comments on this important issue.