Boston Globe seeking information about restraints, staffing, and community integration in group homes
The Boston Globe is seeking information from families of children and adults who are diagnosed with autism and who are living in group homes. That includes group homes that are associated with special education schools for persons under the age of 22.
Below is the message two reporters from The Globe asked us to convey to our readers:
We are reporters for The Boston Globe, and we are researching group homes that specialize in children and adults diagnosed with autism, including group homes that are part of residential schools. We would like to speak with families about their experiences with these types of group homes, including issues around restraints, staffing, and community integration.
We have extensive experience covering health care, social services and family issues in Massachusetts, and are eager to hear from you. You can reach Liz Kowalczyk at Lizbeth.kowalczyk@globe.com or 617-291-4318, and Stephanie Ebbert at Stephanie.ebbert@globe.com or 617-504-6381. We understand these can be sensitive issues, so if families want to reach out initially without using their names, that is fine too. Many thanks for your help.
We are always ready to offer our help to mainstream media outlets that investigate abuse and neglect of persons with developmental disabilities. We encourage you to contact Liz Kowalczyk or Stephanie Ebbert if you think your loved ones meet the criteria they are describing.
We have explained to the Globe that since the COVID pandemic began, we have seen a three-part crisis accelerating in the Department of Developmental Services group home system:
1. Continuing staffing shortages are resulting in both worsening care and conditions in group homes and a reduction in meaningful activities in community-based day programs.
2. Due to an ideology that promotes privatization, successive administrations in Massachusetts have been phasing out state-run Intermediate Care Facilities (ICFs) and state-operated group homes and have been expanding the state’s corporate provider-run group home network. This has stranded potentially thousands of people who are unable to function in community-based settings or who are unable to access state-run programs.
Meanwhile, the expansion of the provider-run system has been correlated with ever-rising financial compensation of provider executives and continuing low pay of direct-care workers.
3. Family members and guardians who complain about the problems noted above often find themselves marginalized by DDS. They are sometimes banned from contact with their loved ones; and, in some instances, the Department has challenged their guardianships.
If the Globe is able to help us shine a light on any of these issues, it will help lead to better lives for some of the most vulnerable members of our society.
COFAR blog 
I am so happy to see Boston Globe reporters reaching out for this important information. Over the years we have been told so many stories of neglect, abuse, or dismissive treatment toward residents and families in the DDS provider system. It has often been extremely frustrating to have this information and to report it to DDS, the Disabled Persons Protections Commission (DPPC), EOHHS, and legislators, and see little to no response. And these underreactions have gotten worse over the years. No replies to our emails, threats to families who complain, eviction of residents when their families complain. I could go on.
We have watched a community based system built during and after the downsizing and closure of the DDS state facilities (ICF’s) during the 1980’s with oversight from the federal court and the state, become a provider run system with no meaningful oversight, and families that are afraid to complain for fear of retaliation against them (not allowing visits, threatening guardianships, eviction of their loved one), and little to no choice in the placement of their family member. You are considered lucky to have a residential placement at all, so don’t complain because you could lose it.
Only the media can bring about meaningful change, and shine a spotlight (literally and figuratively Boston Globe!) on the broken system that exists today. With proper oversight and funding the system can once again be repaired, as it has been in the past, and our families deserve no less. Kudos to the Boston Globe for taking on this challenge, and we stand ready to provide help and support.
LikeLike
Great points, Colleen. I do think we have also had some impact; and with your help and that of others, we’ve brought about some meaningful changes. Great to have the Globe looking into this as well.
LikeLike
Appreciate this …..
LikeLike
This is excellent! Many more investigations need to be done that involved DDS.
I implore Ms. Kowalczyk and Ms. Ebbert to investigate DDS because they have victimized and abused the special needs woman who lives with me. Removing her from my home against her will, which is against her human rights as she is her own guardian. DDS has defunded her and continue to play games with the funding. DDS uses the purse strings to punish people who don’t go along with their plans.
LikeLike
It’s about time that the media reported on what is going on! I agree with everything Colleen said.
LikeLike
Its about time the public hears about what is going in within DDS. They should report on the state-operated 24hr nursing home closure and move in Hadley. More individuals being involuntarily pushed out of their home.
LikeLike
I would like to start by thanking the Boston Globe for taking this on as the system in place is rapidly failing one of our most vulnerable populations and it is time that some light is shed on what truly is happening within DDS group homes. Not only is the system punishing guardians and individuals who speak out but also the employees who are working in the system. I am employeed in a group home and have been with DDS since 2014. When i first started i was so happy to be doing what i was doing and felt i made connections and a difference in the peoples lives i served. I thought “This is amazing” as the staff to individual ratio is generally unheard of in human services/healthcare field and it seemed that all I worked with felt the same way and gave it their 110%. When the COVID crisis hit it took a toll on all of the staff and individuals as well and the response to it. We lost many long standing great staff due to early retirements, unable to obtain child care due to closing of schools and several other reasons. We are now post COVID and what i have seen since is the hiring of not only non qualified staff but non qualified management as well. Temporary staff are being hired from outside angencies at a much higher rate of pay and are not required or qualified to do some of the responsibilities that permanent staff do. This makes for a not so good work environment as temp staff know they do not have to carry the same responsibilities and allowing for “down time” that is not being used in a positive manner. As of October 2022 a new program director took over and this is the solution that has been brought to the table which is not working out at all. The house is dirty, people are going to day programs in clothing that doesn’t fit or is stained and overall just raggedy looking. Inividuals no longer go on outings when returning home from day program. Hair cuts are happening very few and far between. As a matter of fact the program director and a licensed social worker came up with a PICA protocol for one of our individuals and called a meeting at the home to discuss it. This particular individual arrived home after day program chewing her hair directly in front of these people and still it was an additional month before she received a hair cut. An incident at another home within the group that i am employed in caused 4 individuals to be evacuated at the end of February 2023. Instead of going to a hotel which has always been what was done in the past in the case of emergancy, the program director scattered them about in to homes within our group and 2 individuals wound up at the home i work in. Both have a history of explosive mood disorders and not the best fit for the very medically and intellectually challenged individuals that live at this home as none of them are able to verbally express themselves. This caused one of our individuals to be placed in his room on return home from day program, allowed to come out for dinner and a shower only, for “his protection”. When these 2 individuals went back to their residence 2 days later I took a phone call from a guardian of one who wanted to take their brother out, The guardian was told he was not at this residence anymore he has returned to his. Clearly the guardian was not informed of the return home. When I brought up such issues listed above to the program director i was convienantly suspended without my immediate supervisor being notified. When my immediate supervisor inquired why she was not informed of my suspension she too was covienently suspended approx. 1 week later. I too know of the frustrations of the agencies that have been put in place to protect these people such as DPPC only to have it fall on deaf ears. These people need and deserve a voice.
Signed, Concerned Employee.
LikeLike
Anonymous and Anonymous, I hope that you will tell your stories to the Boston Globe reporter.
LikeLike
It’s time the unions and guardians unite to protect the individuals and nurses from mistreatment, and most importantly, being moved out of their homes unnecessarily without humanity!
The state op group homes historically have been known for exceptional care and support for the individuals. Unfortunately, beyond Covid , the new CW state op Director, and CCS Director are very dishonest and target nurses who advocate for safe care, and are leaving. To make matters worse they have no idea how to manage a state op system effectively and safely. The LPN staff that have been bullied and left would happily return with a different management. Residential staff are leaving as a result too.
Thank you Boston Globe , Cofaar and guardians for being a voice for our individuals. Nurses will no longer be silenced! Hoping this information gets to the unions and social media sites, etc
LikeLike
These organizations need need to be over hauled they stole our son John and we the people should be able to decide what we want for our intellectual disabled sons and daughters not them and not some tired old Judge who just goes along with what ever they are told by DDS lawyer’s and not even listen to we the people
LikeLike
https://malegislature.gov/laws/generallaws/parti/titlexvi/chapter111/section70e
General Law on Patients’ and residents’ rights.
A lot of issues happening throughout the state, from mistreatment and DPPC not investigating to management making medical decisions and keeping nursing out on important health related conversations, these have put individuals at risk and some have even died due to the negligence from the program’s management. There has been no investigation on management to this date. The commissioner and governor’s office should seriously investigate the entire agency to uncover hostile working conditions of the staff and living conditions of the individuals living in group homes.
LikeLike