Home > Uncategorized > Illinois transparency laws could be a model for programs providing care to disabled in Massachusetts

Illinois transparency laws could be a model for programs providing care to disabled in Massachusetts

When it comes to the public’s right to know, Massachusetts state government has not been in the forefront in recent years, and issues concerning the developmentally disabled appear to be no exception.

Not only are investigative reports on abuse and neglect of the developmentally disabled largely kept secret in this state, but those reports are primarily done by the same agency that provides and manages services for the disabled. In those situations, there appears to be little incentive to let the public in on what the investigations have revealed.

As the new two-year legislative session begins in Massachusetts, COFAR will push for legislation that would make information about the care in the Department of Developmental Services system more available to the public. One place to start appears to be the adoption of online information about performance of DDS provider agencies and abuse and neglect in that system.

Such information, which exists in Illinois, could help families and guardians in making the difficult decision on placement of their loved ones in DDS-funded facilities.

Illinois abuse data on providers could be a model for Massachusetts

Illinois has both a human services “provider scorecard,” which offers comparative information about group home provider performance, and an online database that allows comparisons of numbers of abuse allegations and abuse substantiations among individual providers in the state. One caveat about Illinois is that these information sources appear to be extremely difficult to locate on that state’s Department of Human Services website.

The Illinois database appears to be a response to a series of articles in 2016 by The Chicago Tribune, which had described a system of privatized group homes in that state in which “caregivers often failed to provide basic care while regulators cloaked harm and death with secrecy and silence.”  The relative lack of coverage of these issues by mainstream media outlets in Massachusetts, and the relative lack of interest as well in the Legislature, may explain why few if any of these sources of online information are available in this state.

The DDS in Massachusetts does provide online provider licensure reports. But these reports on individual providers tend to contain vague and generic findings and recommendations that make comparisons among providers difficult. The licensure reports, which are also difficult to find on the DDS website, don’t reveal or discuss findings of abuse or neglect within the residential or day program facilities.

At least some of that comparative information that is missing in Massachusetts can be found on the Illinois Human Services Department website.

Provider Scorecard

Among the comparative online information available about the Illinois human services system are licensure scores for providers in the state known as BALC scores. As the website notes, the BALC scores are divided into several categories:

A (BALC) score of 100% indicates the provider is in full or acceptable compliance;

93-99% is considered an acceptable standing;

80-92% results in a written “Notice of Violations” and requires an acceptable plan of corrections;

70-79% indicates the agency is minimally compliant and will be on probation for up to 90 days; and

69% and below results in the disallowance of new admissions.

While the DDS licensure system in Massachusetts provides ratings for providers on dozens of individual measures, the ratings are difficult to understand, and there is no way for the public to compare providers on overall performance as there is on the Illinois provider scorecard site.

Also potentially important on the Illinois provider scorecard are comparative ratings of the average health risk and average maladaptive behavior of the residents of provider residences. No such information is available in Massachusetts.

The Chicago Tribune stated that the Illinois provider scorecard includes group home inspection results and links to online copies of investigative findings involving abuse, neglect or financial exploitation. We were not able, however, to locate those links.

Disclosure of data would supplement an abuse registry

The types of online information available or reportedly available in Illinois would be something that would potentially supplement a proposed registry in Massachusetts of caregivers who have had abuse charges substantiated against them.

The proposed registry in Massachusetts came close to enactment last year, but ultimately was not approved. Even that registry, however, would itself not be transparent in that the names of the persons listed in it would not be made public under the legislation that was under consideration in the just-concluded 2017-2018 legislative session. So it is important that there be information about DDS-funded programs that individuals, families, and guardians can consult to judge the performance of providers for themselves.

The Illinois abuse data list needs to be viewed cautiously, but we think most people looking for residential placements would do that.

For instance, in the Illinois substantiated abuse database, the most important column in the data appears to be the number of substantiated abuse allegations per 100 people served for each provider.

That data can vary widely from year to year, even for the same provider. As the charts we developed from the data for two of the providers show, the Village Inn Cobden had a higher rate of substantiated abuse than the Royal Living Center in Fiscal 2017, but the Village Inn had zero substantiated abuse allegations in Fiscal 2015 and 2016. In both cases, the number of allegations of abuse rose substantially over the three-year period.


Illinois abuse allegations charts Royal and Village

Public disclosure needed of abuse investigation reports

According to the Chicago Tribune, Illinois Human Services Secretary James Dimas told Senate and House lawmakers that his department had launched reform measures to heighten enforcement of group homes statewide and increase public transparency of the system.

The Tribune stated that:

…one of the most sweeping reforms outlined by Dimas would provide limited public access to previously sealed investigative files. The department is working with the Illinois attorney general’s office to provide group home addresses and full enforcement histories to families and guardians.

“I’m committed to transparency,” said Dimas, who was appointed in May 2015 by Illinois Gov. Bruce Rauner.

We think similar transparency is needed for investigative reports done by the Massachusetts Disabled Persons Protection Commission (DPPC). As we have reported, the DPPC’s regulations seem to go well beyond the agency’s enabling statute in stating that “the records of the Commission shall not be considered ‘public records’…” (my emphasis).

The DPPC regulations exempt from disclosure all “investigative materials” compiled by the agency. And the regulations state that the DPPC can determine that “the mere removal of identifying personal data would be insufficient to protect existing privacy interests, or that disclosure would not be in the public interest…”

We maintain that the DPPC’s enabling statute does not state that DPPC records are not public or that all investigative materials are exempt. Additional legislation may be needed clarifying this.

Finally, we would argue that DDS itself should not be involved either in investigating abuse or neglect within its own system, or even in licensing provider-run facilities. Both of those ongoing practices lead to conflicts of interest for DDS and to reduced transparency.

That’s why we will support legislation in the new session along the lines of a bill proposed by Representative Angelo Scaccia,which would take the group home licensing function out of DDS and make it an independent function. That legislation could be combined or paired with legislation to take abuse and neglect investigative functions away from DDS and put them into the DPPC.

Ultimately, we want to see a system of care for persons with developmental disabilities in Massachusetts that is both transparent and free of serious conflicts of interest. We hope the media and the Legislature are truly interested in those goals as well.

  1. Hugo Dwyer
    January 2, 2019 at 1:42 pm

    Hi Dave, One of our friends in CT with a very small organization called Families First managed to get the legislature and the governor to pass Public Act No. 17-61 . The new law requires DDS to do an annual census of the the residential needs of all individuals eligible for DDS residential funding or supports. This includes the Waiting List, Planning List, and Abuse and Neglect Registry, among other data. I think this is another good model for states, though I wish it were easier for regular families to read and assess. Parts of it seem to be written in BureaucratSpeak, deterring people from reading and understanding, but overall it’s a great first step. View Census Report Here Hugo

    Hugo Dwyer Executive Director, VOR 72 Carmine Street Rear Duplex New York, NY 10014

    hdwyer@vor.net 646-387-2267

    You can help VOR by making a secure, online contribution by visiting http://www.vor.net/get-involved/donate-to-vor Confidentiality Notice: This e-mail and any attachments may contain confidential information intended solely for the use of the addressee. If the reader of this message is not the intended recipient, any distribution, copying, or use of this e-mail or its attachments is prohibited. If you received this message in error, please notify the sender immediately by e-mail and delete this message and any copies. Thank you.



  2. itanzman
    January 7, 2019 at 1:30 pm

    For most of the families I know( moderate to severe disabilities), the DDS doesn’t provide choices like…you can choose from Agency A or Agency B. It’s more like… we can offer you a spot in Agency A. Take it or leave it. So if you knew what they were offering you was not very good, there isn’t much you can do about it anyway. There were 7158 bills filed in 2018. Out of those 7158, one hundred eighty were merely administrative ( repetitive bills that didn’t do much ). So there were actually 6978 bills. Out of these only 66 were passed. So less than one percent of all bills filed actually get passed into law. Nicky’s Law had a lot of support. In my opinion the law was extremely strong on due process procedures for abusers, but the public defenders were able to defeat it. I would rather see COFAR sink their teeth into Nicky’s Law.


    • January 7, 2019 at 5:55 pm

      Thanks for your comment. COFAR is supporting Nicky’s Law as are a lot of other advocacy organizations in Massachusetts. As the blog post notes, the transparency bill we are proposing would supplement Nicky’s Law because the abuse registry, which would be created under Nickly’s Law, would not be transparent.

      People need information to make informed choices about DDS services and residential placements. While you are correct that DDS doesn’t normally offer choices, individuals, families, and guardians have the right to request choices, and DDS must take those requests into account.


  3. itanzman
    January 10, 2019 at 2:41 pm

    It would be very helpful if you were to walk us through this. Maybe another blog post would be useful. There are a couple of turning 22 families in my support group who are being told that the private providers are not “picking up their packets.” There are also some people who aren’t happy with their placements and can’t get out. The DDS says that there is nothing they can do. What is the recourse? Another problem is private corporate providers using blackmail on families…such as a do what we want or we’ll throw your kid out sort of thing.


  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: