About the Cofar blog and COFAR
This blogsite is intended to highlight, analyze and discuss current issues of concern to COFAR families, and to involve the general public, administration officials, legislators, and journalists in those discussions. We welcome your comments.
COFAR is the acronym for the Massachusetts Coalition of Families and Advocates, Inc., a statewide, family-supported nonprofit organzation that advocates on behalf of persons with intellectual and developmental disabilities. You can find COFAR’s website here.
COFAR supports a full continuum of choice in high-quality care for persons with intellectual disabilites. Through the efforts of our family members and volunteers, we advocate for adequate funding and staffing for residential and other programs provided by the Department of Developmental Services. We provide advocacy information and advice to families and guardians wherever their loved ones may live.
i wish there was someone that could explain the entire process of the services my brother receives, along with what his rights are as a ricci member, asking the service coordinator with DDS i guess is the wrong person to ask. is there an outside agency that a guardian/family member can get all the information they need?
Is there are similar Site that discusses these DDS topics in the State of CT? If so, kindly advise. Thanks
I am trying to find out info about specific group homes – and also info relating to other families who have a loved one that has been abused in a group home. Also, I have some questions to ask some of the authors of the posts – how can I contact them? I don’t have a twitter account, so can’t do it that way!
Hi Laura, You can contact me at davekassel@charter.net. There’s additional contact information on our website at http://www.cofar.org.
Ohio needs your help in the same battle that the State of Massachusetts went thru ohio now is going the same fight. Let’s link the Tate’s together and share our research & resources.
Very kind regards
Please point me in the direction of getting help in Ohio. We desperately need guidance and support as two of our DCs are slated to close. One in Youmgstown another in Dayton Can anyone provide resource info. Thank u
Hi Robin,
You should contact the VOR, which is fighting the closures on a national scale. Their website is http://www.vor.net. If you do belong to an advocacy organization in Ohio, you can use it to mobilize opposition through legislative, media, and other contacts.
Best of luck!
David
Thank you for taking the time to respond. I will check it out. We have had media exposure. However, we are fighting a very aggressive state system. God bless you.
I am with a sheltered workshop in Missouri and would like to talk with someone within your organization about the impact MASS is experiencing (pro/con) from workshops being closed. Am also curious if the legislative language is protecting those shops that are still open.
Thanks!
Hi Tracy, you can contact me at davidskassel@gmail.com. We can exchange phone numbers.
I am in an emergency situation with my daughter, who is autistic and 39 years old. I developed the first group home for graduates of Boston Higashi School, (randolph), MA in 1999. We have had issues, but the families have all stuck together. We lost one boy to Cancer. We have survived well since 1999, however, a couple years ago the agency took over, as the original agency person retired. After 2 long desperate years, my daughter is getting worse, she is currently since May 10th been in Good Sam, Psychiatric Unit, lock down unit waiting a placement in an Inpatient Psych facility. This because the agency will not take her back into the house until she goes to inpatient psych. This agency, refuses since day one to continue our Higashi ways. I have explained how our daughter understands the process, she and others in the house have a hard time with changing staff. I was told by the Director of the program they will not follow any Higashi process, thy do not like it and our daughter will learn their way. the number of staff coming and going is awful. My daughter can be a difficult individual, however, until now we had many staff who learned how to management Jamianne and she loved them. The Agency has made a point of getting rid of 90% of the former staff, because they will not follow their policy and every change in staff for our daughter makes her more fearfull. They want a 39 y/o autistic to learn their way. She has butted her head at times since she was 8. We all know head butting can be dangerous, I have asked for a consideration to the protocol for my daughter. not to have to go to the ER every time she head butts. Well, she hit her head one time too many and they immediately took advantage and had her locked up. They have staff 7-11 PM and I stay every night. We are in desperate need of help. 781-727-3661. My daughters step dad spends a couple house each night at the hospital and then I come in overnight. HELP>
I just found your website and his blog I have an adult daughter who is in a group home since 2010 in MA. I live over 2 hours away and lately (since Covid issues of lack of staffing and the closure of a day program building ). I know they are trying but she has developed a issue with her health. i am exploring getting her closer to me. However if it means me moving closer to her i can in the future but work full time in my area I seem to having issues finding out if this is possible whether they have openings in my area etc She funded to receive one on one. As I wrote above has developed a condition that requires her to go for treatment 2 x per week and they are missing her appointments as they have short staffing. I cannot drive that far as I cannot do that sort of long distance driving for many reasons I want to know who i can call at your organization .
Hi David, Your articles are very informative. However, in one article, “Per-client abuse data demonstrate relative safety of state-run residential facilities” I had difficulty with understanding the layout of your stats.
Hello everyone!
I’ve been reading with alarm about how the state seems to be arranging plans to close Wrentham Development Center (WDC). I have written a little bit below about how my dear sister Maria has benefiter over the years from being at WDC, and what a tragedy it would be if this great resource were made unavailable.
My sister Maria has benefited greatly from being at WDC. Most importantly, she would have died at a young age if not for the care she received at a developmental center, but more on that later in the text.
Maria loves the gym and the workshops at WDC. She has been totally visually impaired and severely brain damaged since birth, but only when she moved to the WDC did the staff and we ourselves fully realize that she understands a little bit of language, but simply cannot express any words at all. It is like being a stroke victim trapped inside her own body.
In spite of her severe disabilities, she has one strong ability. The staff noticed that she orients extremely well with her cane, both around her residence building and around her activity building. She recently won a statewide prize for cane orientation, and three staff people, including her Certified Mobility Specialist took her to the awards ceremony at the Hall of Flags in the State House. We could see so much joy in Maria’s face at the event and hear so much joy in her vocalizations!
This is such a contrast to an earlier placement, where my mother was horrified to see her little child strapped into a chair and unable to move!
Even now, Maria is quite helpless. She cannot protect herself from almost anything. She can only do extremely simple sensorimotor tasks, which she has insisted on doing over and over for many years. Even smallest change in routine is extremely upsetting to her.
Another important thing is Maria’s medical care. She has very dry eyes, serious skin sensitivities and dental issues (as do I on all three counts!). The caretakers and nurses have always arranged prompt treatment and immediately called me when needed. I know that staff would not have that kind of expertise in a group home.
If not for the Developmental Centers, my sister would most likely have died at a young age. The staff and medical people at her previous Developmental Center, which later closed due to state funding issues, noticed that Maria had a very serious cancer and promptly arranged for her to be treated. She has been cancer free now for many many years.
Maria and those like her have so few things in their lives. Still Maria is so grateful for everything she gets. Please do not deprive Maria and others like her of what little joy their lives can give them! Their joy also spreads to their families and everyone who interacts with them.
Ona Girnius Brown, sister and co-guardian of Maria
David I still do not understand why OUR book is not being written. As you well know the THEY (them) have their books including just these two books “Segregated and Exploited” by NDRN and “A Disability History of the United States” By professor Kim E. Nielsen Assume that you have read it and agree it is soooooooooo bad!!. I can see the book but at 82 it is not in the cards for me to write it. I can surely help and have possible chapters and ways to SEE OUR FOLKS Thanks for all you do Peace Thomas Spellman 414 403 1341