No media covered this important public hearing yesterday

(Cross-posted from The COFAR Blog)

[Note: COFAR sent a notice on Wednesday to media outlets around the state about this public hearing scheduled for Thursday in Worcester.  Not one newspaper or TV reporter showed up.  This is a shame.]

Familes decry DDS’s ‘rigid cutoff’ in providing services

Janet Suarez’s  22-year-old daughter Amanda cannot complete basic hygiene and is “unaware of physical boundaries,” putting her at risk of, among other things, sexual abuse.

Yet, DDS has disregarded the recommendations of clinical experts, Suarez said, and denied her daughter services.  “She stays at home most days,” Suarez said.  “She’s discouraged.”

Suarez was among a parade of people who testified at a public hearing at the Worcester Public Library on Thursday on state regulations governing eligibility for services from the Department of Developmental Services.

It was the same wrenching story again and again as the parents of developmentally disabled children talked about how the regulations have allowed DDS to deem their children ineligible for services because they had scored slightly above the cutoff score of 70 on IQ tests administered by the Department.

Speaker after speaker talked about how their now-adult children are overwhelmingly ill-equipped to cope with society.  Most said their children have virtually no social skills or means of adapting to social norms.  Many of those disabled individuals are unable to or can barely speak.

Eric Olson (at podium) testifies at a public hearing Thursday about the isolation his son has endured after being denied services by DDS.

The parents talked about their desperate need of services from DDS and about their sense of despair and isolation when those services were denied.  In most cases, the family members stated that psychologists had found that their children had severe adaptive problems; yet, DDS had disregarded these findings in focusing solely on IQ scores.

COFAR has joined with the Disability Law Foundation, the Arc of Massachusetts and other organizations, including the national VOR,  in urging DDS to change its regulations, which have given the Department the latitude to deny services to anyone scoring above a 70 on an IQ test.

DDS is also facing a court order stating that it must tie its determinations of intellectual disability to a “clinical authority,” and not base its service eligibility decisions solely on IQ measurements.  But DDS emergency regulations, adopted in the wake of the court order, still appear to give the Department excessive discretion to rely on IQ scores, according to COFAR, the DLC, and the other advocacy groups, which provided testimony on those regulations on Thursday.

Eric Olson testified that his son Matthew has scored between 70 and 80 on IQ tests, making him ineligible under the DDS regulations for services; yet he cannot function without support.  While his son received special education services, he attended work programs.  In the past several years, “he’s been without significant work.  He’s completely idle and isolated,” Olson said.

Donna Frank is the mother of two sons with autism, one of whom was rejected by DDS for services because his IQ was measured above 70.  Ryan cannot cross a road safely and has had to be physically restrained many times while in school programs, Frank said.  She said he has no concept of the difference between clean and dirty, and often comes home from school wearing other children’s clothes.  Like many parents, she said she will have to quit her job to care for him when he turns 22, two years from now.

Also testifying was Gary Siperstein, Director of the Center for Social Development and Education at the University of Massachusetts Boston.  Siperstein maintained that thousands of people with developmental disabilities go without services from DDS because “the regulations demonstrate a lack of flexibility that limits the number of people found to have intellectual disabilities.”

The emergency regulations, Siperstein continued, make it optional for the Department to even consider the standard error of measurement on an IQ test.

While DDS appears to have dropped language that would name the Department itself a “clinical authority” in determining the presence of intellectual disabilities, the regulation still inappropriately lists the Department as the “state intellectual disability authority,” according to Richard Glassman, litigation director with the Disability Law Center.

Glassman maintained that given the thousands of people in Massachusetts who have developmental disabilities and yet are not considered intellectually disabled by DDS, the Department needs to provide services on a broader basis.  “We are raising a generation of young people who are spending their days in their bedrooms playing video games and watching TV,” Glassman said.  “Their only real tie is to the Nintendo Corporation.”

Nirith and David Avraham testified on behalf of their son, who is 21 years old and autistic and was sitting with them in the hearing room.  The young man would frequently rock back and forth in an agitated manner while his mother and father tried to calm him.  Recent immigrants to this country, Nirith and David Avraham said that while their son is a very good artist, he can’t speak and has no social judgment.   Yet, he was denied services after his IQ was measured at 72.

“It’s just me and and my husband to take care of him,” Nirith Avraham said.  “”We have no network.”

Joan Durkin testified that her daughter, a single mother, is becoming desperate about what will happen to her own 21-year-old daughter, Annie,  who has autism and obsessive-compulsive disorder, yet has been denied services because of an IQ measured at 71.  Durkin said her granddaughter is non-verbal,  has no problem-solving skills and needs 24-7 care.  “Yet, DDS says she has no intellectual disability,” Durkin said.



Discuss

19 Comments . Leave a comment below.
  1. Everything about this smells

    and is a testament to the lack of value and importance attributed to the disabled, and particularly the developmentally disabled, in this state. This is truly a sad state of affairs when this agency, charged with serving one of the most vulnerable populations, appoints itself ‘clinical authority’, not for the purpose of serving disabled individuals, but for the purpose of denying badly-needed services to probably thousands of developmentally disabled individuals.

    It is becoming quite clear that this agency is being run not by the clinicians they claim to have–but by attorneys. Why are the new regulations written and in effect prior to the public hearing? Why does testimony get submitted to a staff attorney and not Secretary Bigby? Where is the emergency? Why don’t they just abide by the law? Why are emergency regulations needed when they don’t abide by the law anyway?

    • Affects me personally

      My nephew has been denied essential services due to that cutoff and my dad, a 30 year mental health professional and veteran of the states mental health care system can attest to its inefficiency and lack of resources. Our state, so progressive elsewhere in human rights, healthcare, education and ensuring dignity for our citizens can do so much more and so much better.

  2. What's the general practice regarding notifying the media?

    Sending a notice Wednesday for a hearing on Thursday sounds like awfully short notice to me.

    • I think a day's notice to the media for a public hearing is appropriate.

      It’s a matter of an editor assigning a reporter to go to the event. My first newspaper job on a small metopolitan daily was as a police reporter. You didn’t get a day’s notice to cover an auto accident. The media is supposed to be able to mobilize its forces quickly.

      The real reason there was no coverage of this hearing is that the mainstream media today is no longer interested in public policy issues. Public hearings, in particular, are not considered ‘”sexy” in the way that politicians saying stupid things about rape, for instance, are.

      By the way, notice was provided to the public about this hearing well in advance by DDS. I would hope that the people in the media are aware of those notices.

      • What does 'send a notice' mean?

        Who was the notice sent to at each media outlet? What did it say? Was there any follow up with editors to explain the kind of heart-wrenching personal stories likely to be shared? The media may be at fault, but I’d want to make sure ‘sending notice’ didn’t just mean emailing a list with time, place and bare details before jumping to the conclusion that nobody who was well informed about this cared.

        • Here's the full text of the press notice that was sent out by COFAR:

          DDS hearing set for Thursday on controversial IQ eligibility regulations

          The Department of Developmental Services has scheduled a public hearing for Thursday (November 15) at 1 p.m. in the Worcester Public Library to hear public comments on emergency regulations used by the Department in determining whether persons applying for departmental services are intellectually disabled.

          COFAR will join a number of other advocacy organizations including the Arc of Massachusetts and the Disability Law Center in opposing the emergency regulations, which appear to give the Department latitude to deny services to anyone who scores above a 70 on an IQ test.

          Among those scheduled to testify at the hearing will be Gary Siperstein, Director of the Center for Social Development and Education at the McCormack Graduate School at the University of Massachusetts Boston. Siperstein will discuss a provision in the regulations that would allow DDS to disregard an IQ test’s standard error of measurement in making individual determinations about the presence of an intellectual disability. Siperstein maintains that recent data have shown that DDS disproportionately rejects people mild levels of intellectual disability in determining eligibility for services.

          COFAR, the DLC, and the Arc have submitted written testimony in opposition to a provision in the emergency regulations that named DDS itself as a “clinical authority” in making intellectual-disability determinations. In response, DDS has now dropped that provision from the regulations, but has maintained a provision designating itself as “the intellectual disability authority in Massachusetts.” That designation is opposed by COFAR, the DLC, and the Arc.

          DDS adopted the emergency regulations in September in response to a ruling by the Massachusetts Court of Appeals in July that the Department’s previous regulations, in effect since 2006, were invalid because they did not refer to “clinical authorities” in making determinations on intellectual disability. The case before the appeals court involved a woman who had scored a 71 on an IQ test at age 18, a 69 at age 40, and a 71 at age 42, and who was subsequently denied services by DDS on that basis. The woman was represented in the case by Thomas Frain, an attorney who is also president of COFAR.

          The appeals court maintained that the DDS must “anchor” its determinations of intellectual disability to the standard provided by a clinical authority such as the American Association on Intellectual and Developmental Disabilities (AAIDD). In defining intellectual disability, the AAIDD does not establish a “bright-line” IQ cutoff score, the court noted.

          In written testimony submitted to DDS, the DLC stated that the Department’s emergency regulations, while improved from the original version, still do not appear to have “fully embraced the AAIDD standard” in determining intellectual disability.

          • I meant to add that our press notice was emailed to more than

            100 editors and reporters in Massachusetts who are on our media list. That includes every major paper in the state. We have multiple contacts on our list for the larger outlets like the Globe, the Herald, AP, the Worcester T&G, the MetroWest Daily News, and many others.

          • If I may offer some unsolicited advice

            A couple of thoughts on the announcement:

            “Siperstein will discuss a provision in the regulations that would allow DDS to disregard an IQ test’s standard error of measurement in making individual determinations about the presence of an intellectual disability” wouldn’t necessarily cause my pulse to quicken if I were an assignment editor. The first three paragraphs of this post about the hearing would.

            Sorry, but nothing in the announcement gives me a good idea of the impact on family members. Certainly not the way this post does. I’m not sure it’s fair to expect a city or metro editor to fully grasp what “subsequently denied services by DDS” means without spelling it out the human impact a little more, the way this post does, when they’re going through perhaps dozens of other press releases trying to figure out how to allocate staff.

            Also, I’m not sure you can rely on a single mass email to be received by everyone on your list (I’ve had messages from other divisions in my company trapped in spam filters). Following up with calls to some of the Worcester-based media might have been useful.

            • You're probably right that I should have followed up the press notice

              with calls to the Worcester-based media, in particular. I’m pretty sure they got the message, though, because there’s a lot of redundancy built into our press list. A lot of different reporters and editors get our messages.

              I understand your point about emphasizing the impact on families, but I would think that a news editor would recognize from the notice that a potentially important public policy issue is involved. The notice makes it clear that this issue has to do with people getting denied services, and the headline labled the regulations “controversial.”

              This is about assigning a reporter to cover a public hearing — not a major commitment of a media outlet’s resources.

  3. The House–with support from both sides of the aisle– passed to be engrossed (the last step before enactment) my proposed legislation to adopt the federal definition of developmental disability that measures disability by function rather than arbitrary IQ at age 18. The bill then went to the Senate where we expected it would be enacted in informal session. In the meantime, the DDS promulgated this regulatory amendment to create a justification to kill the legislation in the Senate. If you don’t like the regulation, which continues the inexplicable half measures of the agency for people in need, please reach out to the Senate. I’ll post the current version of the legislation (and thanks to the Disability Law Center and many families for helping me on this effort) so you can reach out on the bill number specifically. If the Senate passes the legislation to be engrossed, I believe the House will enact the measure in short order to modernize Massachusetts law. We’re running out of calendar year.

    dan-winslow   @   Mon 19 Nov 8:25 AM
    • Dan, I would just clarify that DDS promulgated this regulatory amendment

      in order to be seen as complying with a Massachusetts Appeals Court ruling in July that the regulations then in effect were invalid. Those previous regulations, adopted in 2006, provided no “anchoring” clinical authority for DDS’s cutoff of eligibility at a 70 IQ, according to the court.

      That said, I think your bill is a great start and should have been enacted in the previous session.

  4. How precise are IQ tests at that scoring range?

    Seems like a classic case of trying to assign a single score to a remarkably complex decision, which is fraught with problematically inefficient outcomes.

    • My understanding is that the margin of error on most IQ tests

      is plus or minus 5 points. That’s one of the problems with the DDS’s practice of disregarding the margin of error, and cutting off someone who scores even a 71. Beyond that, as you say, relying solely on an IQ test to determine intellectual disability is often a mistake.

      As a number of people testified at the hearing, their children scored higher than 70 in many cases (some of them described their children as “savants,” in that they have tremendous aptitude in a single area, such as art or music), and yet they lack the ability to adapt to societal norms.

  5. A public hearing is not an auto accident.

    Yes, there’s such a thing as instantaneous news where you rush to the scene and do the best you can. For something like this though, if I were the reporter I might like to take a little time to research the background so I could ask intelligent questions if the opportunity arises.

    • I can only speak from my experience as a reporter,

      which was admittedly many years ago. When I was sent out to cover a hearing, there was no expectation that I would research the background beforehand. I was assigned to go there and learn about the subject while I was there. Public hearings are like that — there’s usually input from many different people. If I had questions, I could talk directly to the people who were at the event, whether they were state or city officials or ordinary citizens. It’s a news event, not an opportunity for a graduate dissertation.

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