Developmental Disabilities
Jack London on Institutional Life
07/19/09 07:30 Filed in: Literature
I've had the distinct honor in my career of working with a number of people who lived in Illinois' institutional system. As a result, I've heard a variety of stories about what this experience was like from their perspective. Those perspectives are many and varied, and always fascinating.
Forest City's own Dr. Kouris is a member of the American Academy of Developmental Medicine and Dentistry. The AADMD is an organization dedicated to to improving medical and dental care for people with developmental disabilities. In their most recent newsletter they provided a link to a 1914 essay by Jack London titled Told in the Drooling Ward. The essay is told from the first-person perspective of Tom, a person living in a large institution.
In the current political climate in Illinois an "institution" for people with a developmental disability is essentially any congregate living setting larger than 8 people. Originally, however, this word in the context of London's story referred to massive facilities built on the asylum model. These structures were typically built on the outskirts of small population centers, and were designed to be self-sufficient (thus maintaining separation). Many of the asylums were working subsistence farms, housed their own power plants, had textile operations for clothing the residents, and nurseries to care both for the infants admitted, and for those born there to the residents. It was typical for the staff working at the programs in the turn of the century to also live there. The Dixon State School was originally a train stop, with the rail grade that ran through the grounds now converted to a bike path.
In short, these were encapsulated worlds unto themselves, with much of the work of maintaining the colonies done by the people living there. London's story, contemporary to the era of these facilities heyday, is extremely consistent with the accounts I've received from the people with whom I've worked. For many of the people living in these settings - particularly those with more severe disabilities - they represented hellish conditions of barely sufficient custodial care. But for a select few - like Tom in the essay - life in the institution presented a setting in which, unlike the wider world outside of the facility, they had real and satisfying responsibilities. I have personally worked with a couple of different women who, for example, fondly recall being "working girls" - working in the nurseries and caring for babies.
Illinois began dismantling it's asylum system in the 1970's and, while it is still woefully behind the rest of the nation in funding smaller settings and closing the large facilities, it no longer operates on the separated colony model that once was in place. The people from whom I've had the privilege of hearing these stories are now in their 50's, 60's, and 70's. Like survivors of the Great Depression and World War II they represent a rapidly disappearing and unreplaceable resource.
The essay is an excellent, brief read, entirely available online at the site linked to above. I highly recommend it.
Lawmakers Leave Budget in Limbo
07/02/09 06:17 Filed in: Politics
The end of Illinois' fiscal year passed on June 30th, 2009 with no budget resolution completed except for the "Doomsday" budget which dramatically scaled back or completely eliminated a wide array of social service programs in the state.
On the following day Governor Quinn vetoed that Doomsday budget, leaving the state with no budget and no means to operate. He's made a statement requesting that people providing state services continue to work and ensure continuity of services but was quoted in multiple sources, including on WGN Radio's website, as saying: "Until a budget is in place, the state has very limited authority to pay its vendors and grantees... vendors and grantees who currently perform state services do so at the risk of not being paid." [emphasis mine]
We discussed grantees a bit in this space a couple of weeks ago, but did not touch upon vendors. While many of us probably think of a "vendor" as being a person running a stand somewhere that sells items (say, for example, a hot dog vendor with a cart) the term actually takes on a very broad definition under the state's definition. For the state of Illinois, a vendor can essentially be anyone who provides work for the state who is not a state employee.
At a State Operated Developmental Center, which serves adults with developmental disabilities, for example, the word "vendor" can refer to a wide variety of services that range from the companies delivering food to, and taking trash away, to the doctors delivering medical care. In some cases these are large corporations but, often, these are small companies or even individuals who provide services to some of our state's neediest residents.
In the past, as the state has engaged in significant delays in its payment schedules, some of those vendors have found it necessary to stop providing services. In the past year state programs for people with significant disabilities have seen food vendors simply stop coming, for example, and had to scramble to make sure the people they serve could actually eat.
In the midst of this the Illinois lawmakers have apparently decided not to return to work on the budget until July 14. Steven Brown, a spokesperson for Speaker Madigan indicated that this date - two weeks out from the end of the fiscal year - was chosen due to concern for the lawmakers personal schedules. Steve Brown was quoted as saying "We surveyed members and tried to figure out when their schedules would allow them to come back, with the least amount of disruption to their lives," Brown said. "The president and the speaker are trying to treat members as if they're human beings and they have their own lives."
This suggests to this reader that the impact on the Lawmaker's vacation schedules is by far more important to the members of our General Assembly than is the impact of this delay on the lives of children and adults with autism, developmental disabilities, and mental illness.
On the following day Governor Quinn vetoed that Doomsday budget, leaving the state with no budget and no means to operate. He's made a statement requesting that people providing state services continue to work and ensure continuity of services but was quoted in multiple sources, including on WGN Radio's website, as saying: "Until a budget is in place, the state has very limited authority to pay its vendors and grantees... vendors and grantees who currently perform state services do so at the risk of not being paid." [emphasis mine]
We discussed grantees a bit in this space a couple of weeks ago, but did not touch upon vendors. While many of us probably think of a "vendor" as being a person running a stand somewhere that sells items (say, for example, a hot dog vendor with a cart) the term actually takes on a very broad definition under the state's definition. For the state of Illinois, a vendor can essentially be anyone who provides work for the state who is not a state employee.
At a State Operated Developmental Center, which serves adults with developmental disabilities, for example, the word "vendor" can refer to a wide variety of services that range from the companies delivering food to, and taking trash away, to the doctors delivering medical care. In some cases these are large corporations but, often, these are small companies or even individuals who provide services to some of our state's neediest residents.
In the past, as the state has engaged in significant delays in its payment schedules, some of those vendors have found it necessary to stop providing services. In the past year state programs for people with significant disabilities have seen food vendors simply stop coming, for example, and had to scramble to make sure the people they serve could actually eat.
In the midst of this the Illinois lawmakers have apparently decided not to return to work on the budget until July 14. Steven Brown, a spokesperson for Speaker Madigan indicated that this date - two weeks out from the end of the fiscal year - was chosen due to concern for the lawmakers personal schedules. Steve Brown was quoted as saying "We surveyed members and tried to figure out when their schedules would allow them to come back, with the least amount of disruption to their lives," Brown said. "The president and the speaker are trying to treat members as if they're human beings and they have their own lives."
This suggests to this reader that the impact on the Lawmaker's vacation schedules is by far more important to the members of our General Assembly than is the impact of this delay on the lives of children and adults with autism, developmental disabilities, and mental illness.
Functional Assessment in Sycamore
07/01/09 07:04 Filed in: Training
The nice folks at Opportunity House in Sycamore, Illinois graciously hosted me for a training in functional assessment yesterday. There were lots of good questions asked during the question and answer session, which always makes a training more fun and interesting to present.
As with our other recent training sessions, I'm posting the slides here and in the sidebar at right for anyone who wants to look through them.
The staff at Forest City Behavior provide multiple training presentations each year on a variety of topics related to autism, developmental disabilities, Applied Behavior Analysis (ABA) and other behavioral treatments, psychiatric treatment for people with DD. If you are interested in having a member of our team come to your site to talk, please feel free to contact us.
As with our other recent training sessions, I'm posting the slides here and in the sidebar at right for anyone who wants to look through them.
The staff at Forest City Behavior provide multiple training presentations each year on a variety of topics related to autism, developmental disabilities, Applied Behavior Analysis (ABA) and other behavioral treatments, psychiatric treatment for people with DD. If you are interested in having a member of our team come to your site to talk, please feel free to contact us.
They've Gone Home...
06/26/09 10:09 Filed in: Politics
After all of the newspaper articles, rallies, and speeches discussing the need to proceed with a proper budget for developmental disabilities services in Illinois, the legislators ended their special session on Wednesday of this week and went home essentially having accomplished nothing. The best that can be said for the process at this point is that, after all of this wrangling about how services were simply going to end, Governor Pat Quinn was quoted as finally saying “I’m not going to preside over that kind of wholesale slash and burn of human services” in the Springfield Journal Register on Thursday.
Illinois is no stranger to budget struggles. For more of the past several years than I care to remember we've ended the state's fiscal year with no budget, and the legislature going into special session in order to rectify that. Each year this results in confusion and uncertainty for service providers who operate with little to no margin for that uncertainty. This unfortunately means that this recurring poker game played in Springfield every year is played with the lives of our most vulnerable citizens as chips in the pot.
Illinois is no stranger to budget struggles. For more of the past several years than I care to remember we've ended the state's fiscal year with no budget, and the legislature going into special session in order to rectify that. Each year this results in confusion and uncertainty for service providers who operate with little to no margin for that uncertainty. This unfortunately means that this recurring poker game played in Springfield every year is played with the lives of our most vulnerable citizens as chips in the pot.
Illinois Threatens Autism and Developmental Disability Service Cuts
06/16/09 05:52 Filed in: Politics
"Every day when you came in to work you'd watch for the sign at the front gate saying 'paychecks are in'. There was a credit union office right outside the gates that did a booming business providing short term loans for the workers while they waited for their checks."
This was a story Tom Bachhuber, a veteran state employee (now retired), used to tell about working at the Dixon State School in Dixon, Illinois, in the 1970's. The State School is no longer in operation, but with the stories coming out of Springfield, Illinois right now, it seems as if those stories from nearly 40 years ago may be coming back around.
Because of the general audience focused upon by major newspapers, it can be difficult to get much information about how the larger budget issues may affect specifically autism and developmental disabilities services. For this reason it seems important to discuss these issues here and make sure that that those who may be affected are aware of the implications of Illinois' budget issues on services. In short, ladies and gentlemen, the situation is dire.
To place these cuts in perspective, a memo sent to DD provider organizations by Lilia Tenity, Director of the Division of Developmental Disabilities on June 11th, 2009, was published publicly on the ARC of Illinois website (scroll down the page to see the memo). In this memo Director Tenity indicates to providers that " The General Assembly recently approved a "50-percent budget" for fiscal year 2010 that cuts a long list of vital services and programs. This budget falls far short of meeting the statutory obligations and needs of the State, and fails to fulfill our basic commitments to the people of Illinois."
She continues: "The legislature's "50 percent budget" cut $2.24 billion from the DHS budget severely impacting our ability to provide vital services to people with developmental disabilities and their families. As a result, we are forced to cut a number of grant programs and consider significant rate cuts to remaining programs."
Director Tenity goes on in the memo goes to list (by funding codes) the grant programs that will no longer be funded as of June 30th. The funding codes and titles are apparently important to bureaucratic systems, but leave something to be desired in terms of description for the rest of us, so we'll clarify a few of them below:
In addition Director Tenity's memo goes on to indicate that "Significant rate reductions, in the range of 20 - 30% annually, for all remaining programs including Community Integrated Living Arrangements (CILA), Developmental Training (DT) and Intermediate Care Facilities for Persons with Developmental Disabilities (ICF/DD) services are still under review." Given that Illinois was already ranked at or near the bottom in provision of funding for community services for people with developmental disabilities nationwide, coming in dead last (51st) for number of people per capita served in small residential (6 or fewer people) in 2006 according to the most recent State of State in Developmental Disabilities report the proposed cuts seem all the more poignant and troubling.
.
These cuts are of concern to those of us at Forest City Behavior in a number of ways. Most directly, and in the interest of full disclosure, we provide assessment and consultation services to many of the types of agencies mentioned above. In the bigger picture, however, it is important for people to be aware that, due to the already meager funding offered in Illinois (51st, remember) most Autism and Developmental Disability service agencies operate on a shoestring budget in the best of times. Successful behavioral treatment requires the active participation of everyone involved in a person's treatment. It requires healthy, fully functional support agencies. In many cases we are providing behavioral services to support and prevent people from moving out of community placements and into state operated institutional settings. With the bare-bones funding proposed by these cuts this will simply no longer be possible.
If these issues concern you as they do us, it is vitally important that your state legislators be made aware of those concerns. You can identify your representatives by entering your zip code at Illinois State Board of Elections search page.
This was a story Tom Bachhuber, a veteran state employee (now retired), used to tell about working at the Dixon State School in Dixon, Illinois, in the 1970's. The State School is no longer in operation, but with the stories coming out of Springfield, Illinois right now, it seems as if those stories from nearly 40 years ago may be coming back around.
Because of the general audience focused upon by major newspapers, it can be difficult to get much information about how the larger budget issues may affect specifically autism and developmental disabilities services. For this reason it seems important to discuss these issues here and make sure that that those who may be affected are aware of the implications of Illinois' budget issues on services. In short, ladies and gentlemen, the situation is dire.
To place these cuts in perspective, a memo sent to DD provider organizations by Lilia Tenity, Director of the Division of Developmental Disabilities on June 11th, 2009, was published publicly on the ARC of Illinois website (scroll down the page to see the memo). In this memo Director Tenity indicates to providers that " The General Assembly recently approved a "50-percent budget" for fiscal year 2010 that cuts a long list of vital services and programs. This budget falls far short of meeting the statutory obligations and needs of the State, and fails to fulfill our basic commitments to the people of Illinois."
She continues: "The legislature's "50 percent budget" cut $2.24 billion from the DHS budget severely impacting our ability to provide vital services to people with developmental disabilities and their families. As a result, we are forced to cut a number of grant programs and consider significant rate cuts to remaining programs."
Director Tenity goes on in the memo goes to list (by funding codes) the grant programs that will no longer be funded as of June 30th. The funding codes and titles are apparently important to bureaucratic systems, but leave something to be desired in terms of description for the rest of us, so we'll clarify a few of them below:
- Pre-Assessment Screening (or PAS) Agencies such as Access Services and PACT, Inc. (among many others) are supported by grant funding in order to connect people with developmental disabilities with services.
- Dental Services, such as those offered by Milestone Dental Clinic in Rockford, Illinois, will no longer receive receive funding.
- "Child Care Institutions" (Program 19D) have been told their funding will be terminated as of October 1st, 2009. This affects children's residential programs such as the Goldie B. Floberg Center in Rockton, Illinois, and Rocvale Children's Home in Rockford, Illinois, among others.
- The Autism Program (or TAP) providers, such as Kreider Services and Easter Seals have been told that they simply will not be funded under the current emergency budget.
In addition Director Tenity's memo goes on to indicate that "Significant rate reductions, in the range of 20 - 30% annually, for all remaining programs including Community Integrated Living Arrangements (CILA), Developmental Training (DT) and Intermediate Care Facilities for Persons with Developmental Disabilities (ICF/DD) services are still under review." Given that Illinois was already ranked at or near the bottom in provision of funding for community services for people with developmental disabilities nationwide, coming in dead last (51st) for number of people per capita served in small residential (6 or fewer people) in 2006 according to the most recent State of State in Developmental Disabilities report the proposed cuts seem all the more poignant and troubling.
.
These cuts are of concern to those of us at Forest City Behavior in a number of ways. Most directly, and in the interest of full disclosure, we provide assessment and consultation services to many of the types of agencies mentioned above. In the bigger picture, however, it is important for people to be aware that, due to the already meager funding offered in Illinois (51st, remember) most Autism and Developmental Disability service agencies operate on a shoestring budget in the best of times. Successful behavioral treatment requires the active participation of everyone involved in a person's treatment. It requires healthy, fully functional support agencies. In many cases we are providing behavioral services to support and prevent people from moving out of community placements and into state operated institutional settings. With the bare-bones funding proposed by these cuts this will simply no longer be possible.
If these issues concern you as they do us, it is vitally important that your state legislators be made aware of those concerns. You can identify your representatives by entering your zip code at Illinois State Board of Elections search page.
Functional Assessment Screencast
05/24/09 13:34 Filed in: Training
Functional Assessment or How to Get Your Behavior Programs to Work was the first online training slideshow that we completed here at Forest City Behavior when we started down the road of putting training online. When the site was re-designed, some items were temporary casualties of the process.
I'm pleased to announce that this training presentation is back. You can click here for the link or find the link for the training presentation in the sidebar at the right.
The Functional Assessment training is an overview of the process of completing a comprehensive functional assessment, interpreting the results and, most importantly, translating the results into a behavior treatment program or plan. It should be helpful for anyone beginning to address behavioral needs.
I'm pleased to announce that this training presentation is back. You can click here for the link or find the link for the training presentation in the sidebar at the right.
The Functional Assessment training is an overview of the process of completing a comprehensive functional assessment, interpreting the results and, most importantly, translating the results into a behavior treatment program or plan. It should be helpful for anyone beginning to address behavioral needs.
Mental Illiness & Developmental Disabilities
05/06/09 09:05 Filed in: Training
Yesterday I was in McHenry, Illinois, giving a presentation on assessment and treatment of people who are dually diagnosed at the request of the McHenry County Mental Health Board. Wendy and the rest of the folks from the MHB were very nice, as was the audience, with lots of good questions and discussion which always makes a presentation more fun to deliver.
I've posted the slides at this link because I understand that there was some difficulty reading some of the smaller print on a couple of the slides. Enjoy!
I've posted the slides at this link because I understand that there was some difficulty reading some of the smaller print on a couple of the slides. Enjoy!
