[Cross-posted from The COFAR Blog]
[Note: This is one of a number of cases we have reviewed in which the state, courts, and providers have acted to reduce and even eliminate contact by family members with their loved ones with intellectual disabilities. We are hopeful that the Patrick administration will change its position in these cases in light of its reversal last week of its position in the high-profile case of Justina Pelletier. In that case, the administration is now supporting the return of Justina to her parents. The administration had previously agreed with a judge who had awarded permanent custody of Justina to the state after doctors at Boston Children’s Hospital charged that her parents were having her wrongly treated for an apparent medical condition.]
Andy McDonald celebrated his 47th birthday at Carbone’s Restaurant in Hopkinton this past Friday with his father, Stan, his step-mother, Ellen, three of his childhood friends, a nephew of his, two members of Stan’s jazz band, and a staff member from Andy’s group home.
It was a low-key dinner, but Andy, who has a mild intellectual disability, was clearly having a good time, sitting next to his dad, keeping up a steady stream of chatter, remembering to engage everyone. He called over to me at regular intervals, “How’re you doing?” And when I answered fine, he would say “Peace,” and hold up two fingers in the old salute from the 1960s.
“I think he came out (of the womb) talking,” a staff member of his group home said.
It was a happy gathering, but a cloud, as usual, hung over it. Andy has been prohibited by a court order, his court-appointed guardian, his group home provider, and the state from ever visiting his hometown of Sherborn, even under supervision. That is where Stan and Ellen still live.
A probate court judge ruled in 2006 that Andy is sexually dangerous, but Stan maintains the finding is based on misinformation and a misinterpretation of a police report from an incident in 1990 in which Andy threatened a neighbor. He has never been charged with a sexual offense, and clinical records indicate he has not exhibited aggressive behaviors in more than a decade.
Stan is now 78 years old. At the birthday celebration, Stan looked happy to be sitting beside his son, but tired. Some people wondered what will happen when Stan and Ellen are no longer able to travel to Andy’s group home. Since he has been banned for life from going back to his hometown, would Andy no longer be able to see his father and step-mother?
“I don’t think that would make any difference to them,” Stan said, referring to the courts and other decision makers. Stan has been fighting for years to be Andy’s guardian. He and his former wife voluntarily relinquished their guardianship in 1986 as part of a settlement of a longstanding custody battle over Andy.
Despite the support of a legislator, many supporters, and even his former wife for Stan’s guardianship bid, there has been no reconsideration by the Department of Developmental Services or the courts of the decision not to appoint him as guardian. And there has been no reconsideration of the Department’s position that Andy should never be allowed to visit his parents in their home. Stan can’t afford the legal costs of trying to change the situation. It was clear that those who make the decisions about Andy do not see him or Stan or Ellen on a regular basis, or have never met them.
When friends arrived at the party on Friday, Andy greeted them with, “You’re lookin’ old. How old do you think I am?” At times, Stan would have to slow him down a bit, particularly when Stan was on the phone with Ellen, who had left to try to find Adam, a friend of Andy’s, who had gotten lost driving to Carbone’s.
One of Andy’s favorite things are scratch tickets; so nearly everyone gave tickets to him, tucked into birthday cards, and Andy spent a lot of time, in between eating dinner and later birthday cake, scratching the tickets to see what he might have won. He ultimately won $19. Once, many years ago, he explained proudly, he won $2,000 on a ticket.
Even as he celebrated his birthday, Andy showed he has a concern about death, particularly of people close to him or whom he admires. He asked me at one point if I knew the song “Abraham, Martin, and John,” about the assassinations of Abraham Lincoln, Martin Luther King, John F. Kennedy, and Bobby Kennedy. “They were good people,” he said. “Their passing is sad.” And he also mentioned the death last week of Ann Davis, the actress from The Brady Bunch. “It’s sad that she has passed,” he said. The Brady Bunch is still one of his favorite TV shows, and he broke out at one point into a rendition of the Brady Bunch theme song.
Ellen never got the chance to eat her dinner. Once she arrived after having located Adam, it was time to bring out the ice-cream and chocolate birthday cake. She brought the cake to Andy’s table, the candles burning, and everyone singing “Happy Birthday,” as she set the cake in front of Andy and told him to make a wish.
Andy blew out the candles, and said his two wishes out loud. “I wish for everlasting life,” he said, “and for the chance to one day return to my hometown of Sherborn.” “God bless you, son,” were Stan’s words to him.