(Cross-posted from the COFAR blog)
A disturbing incident involving an attempted rape of a woman by an intellectually disabled resident of a community-based group home last month can teach us all a valuable lesson.
We’ve been in the midst of the wrong debate here about care for people with intellectual disabilities. We really shouldn’t be having a debate between “community-based” care versus institutional care. What’s really at issue here is the care model for these people in Massachusetts.
Bear with me for a moment.
On June 3, The Lowell Sun reported that a resident of a state-run group home in Chelmsford walked out of his residence, went next door and attacked a pregnant woman as she was sitting in her living room with her husband and three-year-old daughter. The man managed to tear off Amy Hillman’s shirt and jump on top of her before he was pulled away by Hillman’s husband, James.
The group home resident, Tholda Chhom, and James Hillman ended up in the front yard, where Chhom continued to charge at Hillman before running back to his residence just before police arrived, according to witnesses. Chhom was later charged with assault and attempted rape, and has been placed in a “more secure state facility,” according to The Sun.
Meanwhile, the Hillmans and their neighbors have been left asking questions. Will Chhom be allowed to return to the group home? Why were the Hillmans previously told that Chhom did not have violent tendencies, even though he frequently used to yell out of his window at passersby?
The Hillmans, in fact, were so concerned about Chhom, prior to the May 8 incident, that they built a stockade fence around their yard. According to James Hillman, Chhom appeared to be left all day long in his room. But on the day of the attack on Amy Hillman, the staff at the group home reportedly didn’t even know he had left the group residence.
It would be tempting for us to say that Chhom should never have been in a community-based group home; he should have been in a develpmental center, where, at the very least, it would have been more difficult for him to have gotten out out and to attack a resident in the community. But that argument may miss the real point here.
What people like Chhom are missing in the community system — even in state-run community residences — is an intensive care model that meets the federal standards set for Intermediate Care Facilities. ICF-level care, which happens to exist only in the developmental centers in Massachusetts, stipulates that residents receive onsite clinical, medical, and nursing care and full-time supervision. Not everyone with intellectual disabilities needs this level of care. Only a small fraction of them do. But Chhom would appear to be one of them.
That’s why we’re so upset that the Patrick administration is shutting down four of the six remaining developmental centers without replacing the ICF care model available in them. We don’t want the big old buildings there either. It’s the ICF care model we want to preserve for those who need it.
We think the current residents of the developmental centers should be able to stay in their current locations in the most cost-effective residential settings, while receiving the same level of care from their familiar staff. That might well mean they would live in small group homes on the campuses — the “postage-stamp” idea. Meanwhile, other people in the community, such as Tholda Chhom, who need that level of care, should be able to receive it as well.
But the administration is seeking to eliminate the ICF model and replace it with care under which the ICF standards have been waived. It’s referred to as community-based care, but it should really be labeled “waiver based” care, because the standards are lower. Direct-care staffing levels do not have to be as high, clinical and medical personnel can “float” among different homes in geographic regions, and medications can be administered by people with less training.
What does this mean for the safety of neighborhoods around the state where thousands of community-based group homes exist? What does it mean for people like Tholda Chhom, if there will no longer be an ICF-level facility one day to accept him? Will he simply be thrown into prison?
Once again, let me be clear. I’m not trying to make an argument here to preserve the six developmental centers as they exist today, although no doubt we’ll continue to be accused of that.
Go ahead, call it all community-based care. Just keep the care model and let the current residents of the developmental centers stay in their current locations with their familiar staff. And finally, provide the opportunity for ICF-level care for all who need it, such as Tholda Chhom.
A really disturbing story. The result here could have been tragic had the circumstances been just a little different like if this women had been home alone. Thankfully that was not the case.
Seems to me the DDS should have a court date since they operate the home, they are responsible for its supervision and staffing, and they are responsible for the incorrect placement of this man in the group home. They are responsible for putting Mr. Chhom, the Hillman’s and the neighborhood at risk.
Despite what you hear and think, DDS is not always right and as the story clearly shows, not all individual’s with DD have the ability reside in the community.
After reading this, could any possibly believe there is no need for the kind of care available in our ICF/MRs?
The incident at a state-run group home in Chelmsford is unfortunate but should not be used as an excuse to misrepresent what is occurring with regard to DDS services in the state. The Chelmsford incident is about many things including quality of staff, supervision and appropriate placement. It is not about the need to keep all six current ICF Developmental Centers.
Please do not use it as an excuse to justify the continuation of six ICF developmental centers when six are not needed. The DDS plan calls for closing 4 centers and keeping 2 centers open. There does not to be careful and thoughtful individualized planning to ensure that people with disabilities receive the appropriate services needed.
You constantly imply that I’m calling for the continuation of the six ICF centers as they currently exist. I’m calling for the continuation of the ICF care model. Please read the post.
You state that the DDS plan calls for keeping 2 ICF centers open. Not true. DDS has deferred a decision on the future of one of those two centers — the Hogan Regional Center. It may well close next.
That leaves one ICF left, if Hogan closes — the Wrentham Developmental Center, which is operating at or close to capacity. It will never be available for people in the community who might need it, and will stay open only as long as its current residents are living. After that, the ICF model will cease to exist in Massachusetts. That’s the administration’s plan.
since this gentlemen clearly needed some kind of specialized care, treatment and living arrangement why was he placed in the community rather than an ICF–because there were no spaces available in the ICFs? I know the answer is because they have not allowed admissions, with rare exception, for years and years and this story makes me wonder how many other people really would benefit from the services of an ICF but are denied the opportunity.
I wish dcjayhawk would get involved with families so he would hear the many unsuccessful stories, or maybe he chooses not to listen.
This story will only be one of many when the ICF’s close. There are hundreds of people who will not and cannot survive in community living.Their families have tried to get care for them in an ICF only to be denied. Soon, if not already, Wrentham and Hogan will be filled too capacity. Then what does dcjayhawk suggest we do with them?
DDS has NO PLAN and will have no place to accomodate them, when it doesn’t work for them, and all the ICF’s close. How very sad that we have to fight to get the care for them that they so deserve. And how sad it is that there are people giving their opinion that know very little about their very special needs.
and so true.
Hogan and Wrentham are just about at capacity now so in the near future, I guess that regardless of what the persons needs happen to be, the only option will be community.
I actually thought the battle for care and treatment commensurate with an individuals needs was fought and won decades ago!
Dave from HVAD and his rapid response COFAR colleagues are continuing to capitalize off of the incident in a state-run group home in Chelmsford as somehow being justification for maintaining six ICF programs. Based upon using person centered planning, DDS and community programs have been able to successfully build individualized community programs that are currently serving people with many challenging behavioral and health needs, including community programs that serve people with the same needs as people currently in the state’s six ICFs. As a family member I do understand a family’s desire is to find the best environment for their loved one. The overwhelming majority of people who have moved from state ICFs into community programs have been pleased at the outcome and improved quality of life for their loved ones. I also acknowledge there have been some placements that have not worked out as families have envisioned. That seems to be why DDS is pledging to keep Wrentham and perhaps Hogan as ICF choices.
towards anyone who doesn’t agree with you. Others who post on these issues are quite willing to allow you to make decisions for your family member, but you want to make the decisions for everyone else and force your views on them, like a bully.
And now you say perhaps Hogan would be a choice. I wonder what other details have slipped past you.
It’s interesting to note that when one disagrees with the COFAR position (which is held by a small, but vocal part of the disability/family community) there will be a barrage of insults and a general lack of civility. DDS is not calling for the closing of six centers. It is downsizing from six campuses to two. This is the result of less people in a system that once housed the overwhelming majority of people with developmental disabilities. There are now community options that didn’t exist 40, 50 and 60 years ago when the ICFs were the only choice. We also live in a time period where all service systems are changing as the federal government and state government realize they can’t continue or afford to do business as usual. We also live in a period where families of young people with developmental disabilities no longer choose the most restricted settings (ICFs). Yes, the front door is closed to ICFs which prevents access, but even if it were open, the ICF choice across the nation is less and less the future that families want for their loved ones. No matter how much you may want time to stand still, the state is not in a position that it can continue to operate six ICF centers. And by the way, the department’s name is DDS, not dmr.
“there will be a barrage of insults and a general lack of civility” is patently false!
How can families of young people with developmental disabilities choose an ICF/MR setting if the front door is closed to ICFs which prevents access?
attacks against us.
First, you accuse us of being “hard core” and “etreme.” Lately, you’ve been questioning our motives and sincerity. The other day, you claimed that our call for an independent cost study was a “ploy” to delay the closures of the developmental centers. Now, you are accusing us of capitalizing on a tragic incident in the community system. That’s beyond the pale.
You clearly haven’t even read this post, which specifically states that we shouldn’t use the Chelmsford incident to denigrate the community system, but should view the incident as an illustration of the need for the ICF model in Massachusetts.
By the way, while it’s true that the front door is closed on the ICF model in this state, that’s not the case in the rest of the country. The American Health Care Association notes that:
The AHCA further points out that there are more than 7,000 ICF-level facilities around the country, about half of which are privately operated and half state run. So, it’s not true that this model is less and less the future that families want for their loved ones.
It’s pretty evident, dcjayhawk, that you are on this site for one reason only, and that’s to attack COFAR. It’s pretty funny that on top of everything else, you label us a “rapid response” team.
Sorry Dave from HVAD; I didn’t realize that one of the requirements in posting on Bluemassgroup.com was that one had to agree with you and COFAR. It would appear based upon your frequent postings that the only reason you are on this website is to use it as a forum to for distributing COFAR’s message. There are other views, held by the overwhelming majority of the disability community, both nationally and in Massachusetts, which are not in agreement with COFAR’s goal of preserving institutions over other options. Please recognize that a blog should allow the free exchange of a variety of views, not just one. You seem to get very offended when anyone disagrees with your position. I realize your goal is be the messenger for COFAR and that is a reasonable use of the COFAR blog; however if the Bluemassgroup site is about exchanging views among progressive Democrats, perhaps you should allow alternative views to be presented without becoming hyper-sensitive and overly defensive when one disagrees with you.
I’d appreciate it if you would stop leveling personal attacks and questioning our motives. You have never posted on this site and your only comments are to my posts.
I’ve frequently posted and commented on this site on issues that have nothing to do with COFAR. I also disclose my name and profession on my profile page. I see that you don’t. It’s easy to employ an anonymous user name and level personal attacks, and then accuse others of being hyper-sensitive when you’re called out on it.
dcjayhawk will never agree with any point made by COFAR or any of the other commenters because he can’t, he is paid to speak for the providers he represents or he doesn’t have a job and I don’t have a problem with that. But I’m not exactly sure how that qualifies him to make the statement or decide how many ICF/MRs are needed.
The fact that up until some unnamed beaucrat decided to force people to leave them, 900 or so people thought that these 6 ICFs were pretty important, necessary, not excess. No one is being forced to stay in an ICF but they are being forced to leave. I don’t recall any stories about a person wanting to venture out into the community being denied that opportunity.
In the Waltham paper, ARC Mass acknowledged that there are 5% of people with DD who do not have the ability to live and do well in the community. Given that the Department provides services to more than 31,000 people, 5% of that is 1500+ people. If we go along with the generalities it tells me that more not less ICF/MRs situations are required. And even when there were about 900 residents, there were still 600 people who needed it.
Its really hard to reconcile dcjayhawks reasoning.
It is disappointing that anyone who disagrees with the small number of people who make up COFAR are accused of always having ulterior motives. To suggest that the views of others is always because they are uninformed or must be paid to have a different view is insulting and rude and supposedly inconsistent with the rules of the BlueMass.com blog. I would expect your hostility to other viewpoints to be welcome on the COFAR blog which is devoted to promoting a narrow view of disability policies. I would expect more from a blog that advertises it is home to Democratic political progressives.
I truly don’t have a dog in this fight, but it does seem disingenuous of you to criticize Dave because he posts on this topic frequently when it appears that you yourself only come to this site to counter his posts. Any reasonable person would conclude that you have some particular interest in this issue. It would probably be best if you were to disclose what that is.
You are paid to lobby for private providers, its a fact, just stating it. Not sure what is insulting about that.
But just because you lobby for those providers doesn’t necessarily mean you are an expert on the needs of all the disabled.
And just another fact that I stated that really can’t be disputed is that the 900+ residents of the ICF/MRs where content to live out their lives happily until this new initiative came along. They weren’t looking for other placements. No one was forcing them to stay, but they are in fact now being forced to leave. Again, not sure what is insulting or disrespectul about this fact.
Those of us who want to maintain the states ICF/MRs (in a reduced campus size) have never said that community care has to go or should be limited to some arbitrary number of homes. And we’re not suggesting that everyone should suddenly be living in and an ICF/MR.
I don’t think those who can not conform to the community environment should be crammed into 2 facilities. Its wrong. Since both those facilities are just about at capacity, what about all the rest who need that level of care.
My real issue with the point of view is that you are lobbying for one group of disabled at the expense of another group of disabled, doesn’t matter how large or small the groups happened to be. You made it personal by continually portraying the guardians of ICF/MR residents as terrible people and the reason for all things having to do with budget cuts and loss of services for doing nothing more than being unwilling to sacrifice the lives and well being of their family members.
is an “advocate” because it’s his job to do so and not because he has a disabled family member or friend?
is dcjayhawk is the executive director of the Association of Developmental Disabilities Providers. Per its annual filings, this non profit organization exists to promote and address the concerns of the its member organizations and enhancing the political and financial health of its member organizations.
No idea if he has family/frieds with disabilities.
My brother was in and out of state institutions in the 60’s, 70’s, 80’s and into the 90’s, when both state institutions and community programs were very problematic. He was rejected by a community program in the 80’s that had served him and returned to the state institution when the community program felt they couldn’t and wouldn’t serve someone with significant behavioral challenges. I was angry and filed for the state legislature in Kansas, got elected and proceeded to work to improve community services so that the need of people with complex medical and behavioral challenges did not need to be served only in a state institution, but could be served in the community. That required additional funding and eventual closing of state institutions which I supported as the demand for them, and the quality of the community vastly increased; as it has also in Massachusetts. Do I believe all institutions should be closed? Not today, when we don’t have the full array of funding in the community that is needed; however that doesn’t mean that the state has the fiscal resources or the need to continue funding six state institutions, thus I support the current plan to reduce to 2 ICFs from six. Sadly, on this free exchange of ideas among people who identify themselves as Democratic progressives, you dismiss these comments because you place me in one dimension as the paid spokesperson for providers. I work in this field because I believe in community integration and inclusion and in providing supports and services for people with developmental disabilities. I held the same views when I was a teacher, a legislator, the director of Florida’s protection and advocacy programs and as the executive director of President Clinton’s President’s Committee on Mental Retardation, and now as a member of the National Council on Disability appointed by President Obama. Please don’t discount me because I support the position of providers who also work in this field because of their devotion to serving people with disabilities. They work long hours, including direct support workers and directors because they believe in the abilities and potential of the people they serve, not as is frequently stated in an insulting manner on this blog and by COFAR because of the “money”. Am I correct that Dave from HVAD is the hired spokesperson for COFAR; I don’t discount his sincerity if he is compensated or has been compensated as the COFAR spokesperson. I think he’s effective in articulating the viewpoint of a small group of the disability community. I and the majority of the disability community, including self advocates, family members and professionals don’t agree with that position and believe services and supports have improved dramatically over the last 30 years in the community and now serve essentially a very similar group of people; thus the system has changed and downsizing institutions is a natural extension of that development.
It nice to hear that your family member, after many years, is finally situated in a setting that is working for him. And afterall that IS what this is all about, what works best for the individual.
But being involved for all those decades and knowing how it was and what it has evolved into today, its hard for me to understand why you can not concede that ICF/MR residents in their 80s who have spent 70+ years there present as a unique group among our disabled.
They managed to struggle their way to a good quality of life after the horrors of their childhood. In reality, they were the instrument (maybe catalyst is a better word) that spawned the provider industry and the community system. If not for them, and their guardians, there would be NO community system.
After living through that as children, why should they be uprooted and forced to endure any further disruptions in their lives or be put through one more minutes of anxiety simply because government has a new idea. Sure make progress, but not at the expense of these individuals. There is more than enough room to compromise to meet the needs of these unique people. The government makes compromises everyday. And when government stops wasting money in every other area, then I think we can talk about the cost of caring for these people.
What has happened to compassion and humanity. These elderly individuals have already more than paid their dues as far as reforming the system goes. I would think those that have reaped the most benefit of their suffering would just thank them and leave them alone. All the bickering aside, its just the right thing to do.
for our respective organizations. The issue is why you chose not to disclose your identity as the president of the ADDP in your many comments to my posts.
And filled out the form needed to register. Recently I began responding when COFAR and you as their paid or volunteer staff continued to present one side of the issue. I also registered under my full name and bio as GaryfromSudbury, however the website has only allowed me to login once under my own name. I contacted David, who I presume is the Webmaster and he indicated he couldn’t understand why the system wasn’t and continues to not work.
Years ago Judge Tauro specified in a single order all the obligations of the state and the enforcible rights of class members. He ordered the institutions to clean up their act and turned them into the ICF’s they are today. He recognized the many needs of people with developmental disabilities and provided a choice to accomodate these needs: community living and ICF’s for the many that would not function in the community.It’s obvious that dcjayhawk is not cognizant of these special needs. I would suggest he attends COFAR meetings so he will have a better understanding. Also, I would like to point out that the COFAR group shares the same viewpoint that Judge Tauro put into that order. They fully support “CHOICE” for all people,whether they live in ICF’s – group homes – or state operated homes.
I asked the question to dcjayhawk earlier what he would suggest we do with the hundreds of people that will not survive in the community, and received no answer. I thought for sure he had a solution, seeing he seems to have all the answers.