Parents prohibited from even discussing a visit home with their son

[Cross-posted from The COFAR Blog]

When Stanley and Ellen McDonald tried to share and discuss a COFAR Blog post with their son, Andy, during a visit to his group home on June 22, the residential manager told them to stop, or their visit would be terminated.

The post was about Andy’s 47th birthday party, which was held at Carbone’s Restaurant in Hopkinton on June 6, and it quoted Andy’s wish as he blew out the candles on his birthday cake to someday be allowed to visit his boyhood home in Sherborn where his parents still live.   Apparently, even expressing that wish was against the house rules.  Andy and his parents are prohibited by a probate court order and by his residential provider and other authorities from even discussing the prospect of Andy ever visiting his hometown, even under supervision.

A probate court judge ruled in 2006 that Andy is sexually dangerous, but Stan McDonald maintains the ruling is based on misinformation and a misinterpretation of a police report from an incident in 1990 in which Andy threatened a neighbor.  Andy has never been charged with a sexual offense; the neighbor has long since moved away, and clinical records indicate Andy has not exhibited aggressive behaviors in more than a decade.

Placing restrictions on subjects families can discuss with their loved ones in the Department of Developmental Services system is apparently not unusual. As we have reported, the family of Sara Duzan, another DDS group home resident, was cut off from all contact with her after they allegedly violated a prohibition on discussing care and conditions in the group home with her.

Stan McDonald, who is 78, maintains that Andy had not been expressing a wish on his birthday to return to his home to live, but just to visit his parents, and possibly to hear Stan play with his jazz band at the Sherborn Inn.   But while Andy is allowed under his care plan to hear Stan’s band in other locations, not only can he never return to his hometown, he cannot even talk about his wish to do so.

Stan says that after Andy had finished reading the COFAR Blog post with Stan’s and Ellen’s help, the assistant residence manager “expressed what seemed friendly interest, so we gave her a copy.”  A few minutes later, he says, the assistant manager handed him a phone with a call from the residence manager, “who told me to desist from talking with Andy about this or she would terminate the visit.”    Stan says he reluctantly agreed to stop discussing the post, but “Andy and Ellen and I were deeply offended by the ignorance and insensitivity that was exemplified.”

Andy wants to believe he is a good person, Stan says, so forbidding him even from talking about a wish of great importance to him has affected his self-esteem. Andy’s resulting anxiety, Stan adds, is manifested in certain behaviors such as bolting his food until he sometimes chokes, and rapid and slurred speech.

Yet, even Andy’s psychiatrist will not discuss his desire to return to his childhood home with him.  The group home’s solution to Andy’s anxiety is to medicate him, Stan maintains.  The situation, he contends, amounts to “emotional abuse” of Andy.

“Andy has been given a life sentence for a crime he never committed – and with no opportunity to appeal,” Stan maintains.

Stan contends that it is the group home management and DDS itself that do not want to discuss the real issues in Andy’s care.  At a meeting on June 20 to discuss Andy’s annual care plan, Stan says the meeting was abruptly terminated by a DDS official when Stan tried to discuss written comments he had handed out at the end of the meeting about what he views as issues in Andy’s care that have not been adequately addressed.  Those issues, according to Stan’s written comments, include the following:

• Andy’s “extreme anxiety…(which is) directly related to 17 years of refusal of his wishes for visits home — wishes which he is denied even to express,” and the consequent medication to control that anxiety.
• A failure to implement provisions in Andy’s care plan for regular visits to his friend, Tom.
• Sub-standard dental care.  His gums are bleeding. He has gingivitis and periodontal disease.
• A need for more regular exercise
• The group home is over-crowded with five residents.

Apparently DDS doesn’t want to discuss any of that.  It’s bad enough that the DDS officials in charge of the care and services for Andy would not take the time to listen to his father’s concerns at Andy’s annual care plan meeting.  But we particularly do not understand the policy that DDS and its providers apparently have of prohibiting clients in the system from talking about their deepest wishes and concerns, apparently even with clinicians and family members.

How can it serve someone’s therapeutic interest to keep a deep-seated wish or desire bottled up through an enforced order that they not even talk about it?   Is it the clinical approach to care in the DDS system to forbid people from talking about sensitive subjects and then to medicate them to control their resulting anxiety?  Clearly, that policy is not working in Andy’s case, and we don’t think it’s working in Sara Duzan’s case either.