We have been involved in offering training on-site and through this website on a variety of topics for several years. One of our long-term goals has been to bring longer-form, comprehensive training (CEU's) to Board Certified Behavior Analysts (BCBA's) and Board Certified Assistant Behavior Analysts (BCaBA's) in an easy to use, convenient format that eliminates the hassle and costs associated with traveling to trainings.
That goal has been accomplished.
There are three courses available on the website now, including:
- Understanding Autism Spectrum Disorder
- Autism: Diagnosis and Treatment
- Autism: School Eligibility vs. Medical Diagnosis
Additional trainings on other topic areas are already in production and will be arriving at the website soon.
We look forward to training with you!
This debate is not a new one. But usually the sides taken up in the debate are divided between state and community service providers. This time around, however, the line of argument appears to fall between those with real-world experience in providing services in DD and those who operate primarily with only an abstract or philosophical understanding of the issue.
This was illustrated at the COGFA meeting for Mabley on October 17th. Many, many parents and family members took their stories to the commission. Over and over again they explained that their sons, daughters, brothers, and sisters had been served in the community, but that community providers had been unable to manage their needs. In some cases people had been in and out of community programs multiple times, but ultimately returning to state services because of intensive needs.
The response they receive from those advocating community placement? Your child/sibling will be happier and better served in the community.
If that response seems to you to suggest the listener has failed to hear what was said by the parents, you are not alone. Advocates for closure of Mabley Center repeatedly rely upon information about the developmental disability service systems in other states to support the idea of closing centers in Illinois. What they fail to take into account is the fact that, unlike in those states, the Illinois community system has not been prepared to serve people with intensive developmental, mental health, and behavioral needs.
IARF - the Illinois Association of Rehabilitation Facilities - is an organization representing "over 90 community based providers serving children and adults with developmental disabilities, mental illness, and/or substance use dependencies in over 900 locations throughout the state". In short, IARF represents actual community service providers in Illinois.
In their comments to COGFA they wrote:
...we do not believe the aggressive closure timeline of the developmental centers as recommended by the Department is conceivable.
The reasons the closures are "not conceivable" can be found in IARF's recommendations outlining what would be needed to successfully transition people to the community. Key among these are:
Recommendation 4: Develop community-based capacity to appropriately address the needs and wishes of individuals transitioning to the community. This requires funding to supplement – not supplant existing resources for individuals currently being served in the community.
Recommendation 5: Revise existing Community Integrated Living Arrangement (CILA) rates to cover the cost of providing care and clearly identify specialized rates where appropriate. Timely payment must be secured as well.
The board of IARF is comprised of representatives of multiple large and capable community developmental disabilities service providers. Clearly it is in their interest to have people's needs met in the community. They are also acutely aware of the actual state of support for developmental disabilities services in Illinois.
The people and programs with real world experience in providing community services do not support the governor's plan, do not agree with the advocacy groups who support closure. This, if nothing else, should give the legislators and the governor pause.
Several comments within the piece suggest this:
But if he follows through on at least some of these moves, he will make genuine, humane progress on behalf of some vulnerable citizens. (Emphasis added).
The Governor's plan is to attempt to close two facilities and move nearly 300 of the state's most vulnerable citizens out of their homes and into different settings within four very short months. Successful community placement takes time, planning and money. The Governor has allowed for none of these, ensuring that transitions will be abrupt, confusing, and traumatic. In what way is such an approach to be considered humane?
The governor's plans would launch an overdue revamp of the state program serving the developmentally disabled… The governor has started to lay the groundwork for a responsible transition that takes into account the needs of families, guardians and residents, while phasing out an obsolete system.
This is blatantly incorrect. Governor Quinn has announced no plans to revamp the state programs, has laid no groundwork. What he has announced are rapid, unplanned facility closures due to budget shortfalls. The timelines he has offered will almost certainly result in the overwhelming majority of the people at Mabley and Jacksonville being moved to other, *larger* state facilities. This is what happened during the last two closures, both of which offered more than twice the timeline.
Is consolidation of the disabled into a few massive centralized institutions the revamp, the responsible transition the authors are hoping for?
We believe the community system has the wherewithal not only to serve those now housed in state institutions, but to serve them better… State employees of the centers could make the process easier. Staff could support the idea of moving, help match residents with the best possible community placement options and work diligently to assist in the transition.
The mission of the state operated developmental centers has long been to prepare people for transition into the community. However, responsible advocates for the disabled understand that there are no black and white, all or nothing situations or solutions.
With regard to the wherewithal of the community system, those directly familiar with the situation know that community placement options have always been extremely limited in Illinois, evidenced by a waiting list of some 21,000 people (a number which does not include the people in the state operated centers). When openings do become available community providers can choose whom they wish to serve and, understandably enough, they tend to serve people on the community waiting list that do not have the intensive behavioral, sensory, and medical needs of the people served by the state centers.
Indeed, this situation has been further exacerbated by the economic downturn. Governor Quinn's administration has followed Blagojevich's lead in dealing with disability service providers, withholding and delaying payments until many have been rendered destitute. Serving people with intensive behavioral, sensory, and medical needs requires a significant investment of resources. This made identifying appropriate placement challenging in the best of economic times. For the authors here to suggest, in the current economic climate, that the providers the Governor has already spent the past three years impoverishing will now be in a position to rise up and provide highly specialized services is the height of either ignorance or irresponsibility.
As has previously been mentioned here, there is no question that, ultimately, it is possible for the community to meet the needs of the people in these centers. This is, in fact, done and done well in other states. Unfortunately, the Illinois system has not received the adjustments that would be required to make those transitions possible.
The paramount consideration should be the welfare of the residents now in state care. They're a fragile group, and those with challenging behaviors and intensive medical needs should be treated with caution and sensitivity.
And on this point we agree. But it is impossible to fathom how responsible advocates, understanding this to be true, could suggest Governor Quinn's slapdash closure "plan" reflects anything resembling caution and sensitivity.
Mabley Center is a treatment center for people with intellectual disabilities such as Autism and Down Syndrome. It is located in the heart of a residential district in beautiful Dixon, a small town on the Rock River in northwestern Illinois that is also known as the hometown of former president Ronald Reagan.
Founded in 1987 and named after noted journalist and humanitarian Jack Mabley, the center is the newest and smallest of the state's Developmental Centers. Far from being the turn of the century institution that people picture from movies, Mabley consists of seven single story group homes on a tree-lined campus.
Mabley was designed to be a state of the art facility that would prepare people for moving into community group homes by providing treatment in a setting that is virtually indistinguishable from a community setting (It is, in fact, smaller than many community settings). The important difference between Mabley Center and many community settings is in the people it serves and the resources needed to serve them.
Specialized Treatment - the Safety Net
Like all developmental centers, Mabley Center serves people with developmental disabilities. However, Mabley Center is different in that it specializes in serving two distinct and unique groups of people with disabilities:
- People with profound vision and/or hearing impairments (people who are blind, deaf, or both); and
- People with behavioral challenges so severe that they present an ongoing risk of hurting themselves and/or others.
Not only does Mabley Center serve these two specialized groups of people, but it functions as a safety net for the community. Specifically, when a person presents with these disabilities to the degree that a community provider cannot serve them it is Mabley Center's role to offer them a safe place to go.
Some people who have intellectual disabilities are also challenged by an inability to see, to hear, or both. Sometimes this is due to disease such as cataracts, sometimes it is self-induced - caused by accident or by self-inury. Often times the inability to hear or see is present at birth, a part of the same disorder that causes the intellectual disability. In all of these cases the challenge to learning to cope with daily life is further complicated by the fact that the person cannot see or hear the people trying to teach her.
Mabley Center is specifically designed to serve the needs of people with intellectual disabilities who are deaf and blind. The walkways have trailing fences designed to allow the blind to find their way independently from place to place on the campus. All of the homes have trailing rails down the hallways to serve the same purpose indoors. Signs are printed in Braille to ensure people can find what they are looking for on their own.
The staff at the Mabley Center are trained in sign language through the Helen Keller National Center for Deaf-Blind Youth and Adults to communicate with those who are deaf. In addition, for those who are both deaf and blind, the staff are trained in a very specialized technique known as contact sign, which involves making signs in the person's hands. This makes communication possible for people who would otherwise be isolated in a dark, lonely world by themselves. Mabley Center is the only state operated center in Illinois that offers these specialized techniques as a comprehensive service.
With the use of these techniques the staff at Mabley Center are able to help the people living there to grow towards independence. They learn to care for themselves, to work and earn money, and gain relationships with others that would not have otherwise been possible. And, with careful long-term planning, significant supports and resources, and a strong collaborative relationship with community providers, some of those same folks have been able to successfully move into community settings.
Severe Behavioral Challenges
For people with severe psychiatric and behavioral disorders in addition to intellectual disabilities the world is often an unfriendly place. People with these disorders may engage in severe physical aggression towards others - including family, friends, and staff. They may hurt themselves, hitting, biting, and cutting themselves. They sometimes cause significant damage to property - both their own and that of others. They may run away, often without regard to the weather, the time of day, or their own personal safety. Often it is impossible for the person to explain why they are doing these things and very difficult for others to understand as well. Such behaviors can make it impossible for the person to safely remain in their family home or their community group home.
When a person comes to Mabley Center with these needs he or she receives comprehensive psychiatric and behavioral assessment and treatment. Successful treatment for these disorders requires specialized techniques and skilled, experienced practitioners. Because behavioral and psychiatric symptoms can sometimes be caused by untreated medical conditions a comprehensive medical workup is performed by a physician and medical staff with years of experience in the field of developmental disabilities. Each person receives psychiatric services at the center performed by a psychiatrist with decades of experience working with children and adults with developmental disabilities. A team of psychologists and behavior analysts conduct functional assessments - a specialized assessment technique designed to determine why the person has been engaging in the behavior, even in those cases when neither she nor her family or friends have been able to do so - and to develop behavioral treatment plans based upon those assessments.
Also integral to this process is a team of highly trained Direct Care Staff. These staff, who provide the day-to-day care of the people at Mabley Center, are specially trained in techniques to prevent challenging behaviors, to de-escalate them when they start, and to ensure the safety of everyone involved when behaviors cannot be de-escalated. Because they provide the day-to-day care the Direct Care Staff are also a vital component in providing the behavioral treatment techniques that are developed from the assessments.
The Goal: Regaining Community Placement
For people in both groups the goal at Mabley Center is always to help them reach the point where they are ready and able to successfully return to the community. This is a mission that Mabley Center takes very seriously. Mabley Center works closely with an array of community providers and between October of 2001 and June of 2008 has placed 56 people in the community - a number nearly half (47%) the size of Mabley's total capacity of 119, and over half the size of it's actual population over the past three years.
The Goal: Keeping Community Placement
In addition to providing direct services for people at the Center, Mabley has a long tradition of offering community outreach services for the purpose of helping people to stay in their own homes. Mabley hosts the monthly Clinical and Administrative Review Team (CART) meeting for the Northwest Network. CART is a group of professionals from Mabley Center and regional community providers that gathers to offer consultative assistance to people who are struggling with behavioral and psychatric concerns while still living in their homes.
In addition, Mabley Center has offered direct Technical Assistance - teams of professionals sent out to provide assistance on-site - to scores of people living in the community over the past 20 years. That assistance has covered a variety of needs, incuding behavioral treatment, training in crisis management, and training on working with people who are blind and deaf.
Mabley Center also works directly with the Support Service Teams to provide short-term stabilization of people with intensive behavioral needs. This is a new process intended to help people in crisis stay in their homes if possible and, if not, to stay out of their homes for as short a time as possible.
Apples and Oranges
In the discussion surrounding closure there have been, and will continue to be, comparisons made between Mabley Center and institutions, between Mabley Center and community providers. The truth is that Mabley Center is something different - a small, specialized program for people with needs they were unable to have met in the community, and working with those in the community to help them remain in their homes. Meeting those needs requires experienced people with specialized skills - doctors, nurses, psychologists, behavior analysts, and specially trained direct care staff. Mabley Center is unique and different from anything else offered in the state of Illinois.