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Archive for November, 2012

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

November 16, 2012 1 comment

[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.]

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 in 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.

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DDS online licensure data remains out of date

November 9, 2012 2 comments

We’ve raised a number of questions over the past year about the thoroughness and effectiveness of the state’s policies and procedures for inspecting and licensing group homes for people with intellectual disabilities. (See here and here.)

Unfortunately, we were unsuccessful in persuading the Legislature’s Children, Families, and Persons with Disabilities Committee to hold a hearing on the issues we raised. 

But in response to our concerns, the Department of Developmental Services did indicate it was making efforts to update group home licensure reports on its website that we found were sometimes years out of date. 

These licensure reports provide both information about the results of inspections of the vendors’ group homes and the type and duration of the license or licenses each vendor has been granted.  The licenses are normally granted for two-year periods, so any such licensure reports that are more than two years old are, by definition, out of date.

In May of this year, DDS Commissioner Elin Howe stated in a letter to Representative Kay Khan, co-chair of the Children and Families Committee, that in addition to updating the licensure reports on the DDS website, licensure follow-up reports were being posted as of that time showing the outcomes of deficiency findings in the original reports.

As a result of these assurances from DDS, we went back and took another look this week at the online DDS licensure data for the same sample of 30 group home vendors that we first examined more than a year ago. 

Based on the follow-up we’ve just done, it appears that DDS has taken some steps to update the licensure information on its website; however, much of the information still appears to remain out of date.   Of the same 30 providers, licensure reports for 11 were still out of date as of this week, and one report (for the Merrimack Education Center) was no longer posted.  That’s now 40 percent of the sample with out of date or missing reports. 

Also, the promised follow-up licensure reports or updates were posted for only eight of the 30 vendors in the sample.  (See table below with the latest results of our review of the DDS online licensure reports for our vendor sample.)  No follow-up reports were posted for any of the 44 vendors listed on the website in the Metro Boston area.

In addition,  the licensure reports posted on the DDS website for Behavioral Associates of Massachusetts (BAM) and the Center for Human Development (CHD) —  two vendors that we selected for review — remained out of date this week, and no follow-up reports or updates were posted for either vendor.  The BAM licensure report was dated April 2009 and the CHD report was dated November 2010.

We had reported in our April 2012 newsletter that DDS didn’t appear to have followed up on numerous deficiencies noted in the BAM and CHD licensure reports.    As we noted in the newsletter article, a subsequent licensure report for BAM, dated May 2010, addressed some, but not all, of the licensing deficiencies identified in the previous April 2009 report.

Yet, that same April 2009 document was still the only licensure report for BAM that was posted on the DDS site as of this week.  We had received the subsequent May 2010 licensure report from DDS in February of this year in response to a Public Records request.  By the way, even that May 2010 report would have been out of date by now had it been posted on the DDS site.

Similarly, the November 2010 licensure report for CHD is now out of date because the two-year license for the vendor was listed in that report as valid through October 2012.

As we reported in the same April 2012 newsletter article, the November 2010 CHD report had cited the vendor for failing to report three incidents of abuse or neglect to the state Disabled Persons Protection Commission.  In response to our same Public Records request, we received a follow-up report on CHD, dated December 2010, in February.  Yet, as of this week, that December 2010 follow-up report had not been posted on the DDS site.

We sent an email message to DDS Commissioner Howe asking why it is taking so long to replace out-of-date licensure reports on the DDS website and why so few follow-up reports appear to have been posted.  We cc’d Rep. Khan’s general counsel on the message.  So far, we haven’t heard back from either Howe’s or Khan’s offices.

Results of COFAR review of DDS online group home licensure reports as of the week of November 5, 2012

DDS Vendor Date of licensure report posted online Status of posted report Follow-up reports or updates posted
Central-West Region      
Aditus, Inc. July 2011 Current None
Behaviorial Health Network, Inc. October 2011 Current None
Center for Human Development, Inc. November 2010 Out of date None 
Evergreen Center, Inc. May 2010 Out of date None
Independent Living for Adults with Special Needs, Inc. September 2010 Out of date None
Mass Mentor January 2012 Current None
Nonotuck Resource Associates, Inc. April 2012 Current May 2012
New England Center for Children, Inc. March 2011 Current None
Seven Hills Foundation, Inc. October 2011 Current November 2011
Western Mass. Training Consortium, Inc. May 2010 Out of date None
Northeast Region      
American Training, Inc. December 2009 Out of date November 2011
Central Middlesex Arc, Inc. September 2008 Out of date None
Fidelity House, Inc. April 2012 Current July 2012
Merrimack Education Center No report posted  Unknown August 2011
Minuteman Arc for Human Services, Inc. July 2008 Out of date None
Project Cope, Inc. June 2011 Current August 2011
Southeast Region      
Arc of Cape Cod, Inc. March 2011 Current None
Behavioral Associates of Mass., Inc. April 2009 Out of date None
Cardinal Cushing Centers, Inc. May 2012 Current None
Cerebral Palsy of Mass., Inc. June 2011 Current September 2011
Kennedy Donovan Center, Inc. October 2010 Out of date November 2010, August 2011
Road to Responsibility, Inc. June 2008 Out of date None
Work, Inc. November 2007 Out of date None
Metro Boston Region      
Charles River Arc, Inc. May 2011 Current None
Delta Projects, Inc. August 2011 Current None
Justice Resource Institute, Inc. August 2011 Current None
North Suffolk MHA, Inc. April 2011 Current None
Till, Inc. August  2011 Current None
Vinfen, Inc. December 2010 Out of date as of Nov. 8, 2012 None
Walnut Street Center, Inc. May 2012 Current None