BANGOR, Maine — A Hermon couple who clashed with the state over moving their autistic son into an assisted-living facility finally has an empty nest.
Gary and Cindy Burke spent this week lugging boxes to The Getchell Agency in Bangor, their 24-year-old son Casey’s new home. The move marks the end of months of frustration in the couple’s dealings with the Department of Health and Human Services and the beginning of a home life free of Casey’s increasingly violent outbursts.
“Casey left home this morning and we were both pretty emotional because we know he’s not coming home tonight,” Gary said Wednesday. “We know it’s the right thing to do, we know it’s right for him and for us, but it’s hard to let go of 25 years of 24/7 care.”
The Burkes reluctantly decided last summer that Casey needed to move out after he punched through their garage window. Attacks on Cindy followed, as Casey, who’s nonverbal, struggled to express his feelings.
DHHS originally told the Burkes that Casey temporarily would be placed in a crisis facility before moving to an assisted-living facility. While The Getchell Agency had room for Casey, funding constraints prevented him from moving directly into a permanent home there.
The Burkes fought back, arguing their son was approved for residential services and would be traumatized unnecessarily by the two-step transition.
Last week, a DHHS employee called to say Casey had been given a green light to move into Getchell.
“It just all of a sudden came together,” Gary said.
He credited an April 6 newspaper article for shedding light on their plight, as well as state Sen. Nichi Farnham of Bangor and the staff at Getchell. Friends and even a few strangers also advocated for the family.
“We had so many beautiful supporters that came forth and were going and talking to their representatives for us,” Gary said.
Ricker Hamilton, acting director of DHHS’ Office of Adult Cognitive and Physical Disability Services, was on vacation Wednesday and could not be reached for comment. Earlier this month, he said the state works to maximize limited dollars for developmental services in light of intense demand.
Hundreds of people with developmental disabilities are on a waiting list for the same services Casey receives.
So far, Casey is excited and settling in well at his new home, Gary said. He set up his bedroom with his favorite model tractors and a John Deere rug.
“He’s making himself right at home,” Gary said.
Casey’s newfound independence brings with it a new dynamic for the family.
“Like somebody said to us the other day, ‘Now you can stop being caregivers and now you can be his parents,’” Gary said. “I thought that was kind of a nice way to put it.”
So how did the couple expect to spend their first night without Casey in nearly 25 years?
Cindy planned to bake cookies with a group of women from her son’s day program. “I think I could use the distraction for a few hours and kind of get my mind off of Casey,” she said.
Casey, meanwhile, had some plans of his own.
“He and his roommate are going to go watch a movie, so that’s what he’s got on his mind tonight,” Cindy said.
Congratulations!
I found that a lot of people at the DHHS love to lie a lot. They tell you one thing and do another behind a clients back. There should be more accountability and less lying.
Would love to talk to this couple as I have a child who is non-verbal as well…
Just wondering, do you think your child’s autism is in any way linked to vaccinations he received as an infant? Best of luck to you and yours.
mine wasn’t, her’s is genetic… carried from her father.
Some years ago it was reported on the news that research date related to autism and vaccinations had been faked.
Oh man, not the vaccine thing again. How much data do you require to drop it?
Oh, I suppose you are highly qualified to make that statement? Unless you have studied this, or have a college degree in a related field, then I suppose that your opinion is just that…YOUR opinion. Explain why my son who has autism, was developmentally reaching his milestones as a baby, then 21 days after MMR shot he lost all of his language and regressed developmentally. Explain why he had a rash at his injection site that came back in the same spot every month for 3 years in a row-yes the pediatrician had that docummented as a vaccine injury. I believe that children become autistic in various ways-vaccines being one of them. Explain why a friend of mine had her autistic son tested for mercury exposure, and they found her sons entire intestinal tract coated with mercury. You want data? There you go……
Because peer reviewed scientific studies have found no link. In your case, the answer is coincidence. Your friend’s son’s mercury exposure didn’t come from a vaccine because they haven’t used thimerisol in childhood vaccines for years.
To prove your ignorance on this matter…thimerosal (you spelled it wrong to begin with) IS still present in childrens multi dose vial vaccines. In my opinion, some kids that become autistic were given injections containing thimerosal that were in vials that were near empty, and contained higher concentration of this ingredient since it settled at the bottom of the vial. The studies didnt figure that factor in.If you dont believe me check out the FDA website. They havent removed Thimerosal from ALL vaccines. But answer me this, why is it that since the big surge in autism diagnosis, and parental complaints such as mine, has the FDA recommended reducing and even eliminating the amount of Thimerosal in vaccines? If there is no problem, why make that suggestion?
go to http://www.fda.gov
Oh by the way, in my opinion they will NEVER admit that the thimerosal can cause autism, because think of the massive amount of lawsuits pharmaceutical companies would face. Also research how involved pharmaceutical companies are in regards to political donations. Do some research on this. Then you form an educated opinion. Just the mere fact that you stated that thimerosal is no longer used in ANY childrens vaccines is in error.
Problems with DHHS? No accountability? One person telling you something and another telling you something different? Articles like this are why I cannot support the Government having anything to do with healthcare more than they already do at any level.
Yes, because we all know that the private sector is just terribly accountable in health care. The reality is that these stories get told because they are about government – where we expect, should demand, and mostly get – accountability. The private sector has relatively little oversight in comparison, and medical malpractice in the private sector has to be extremely egregious for people to have adequate cause to win in court.
I have never seen a private hospital even remotely in the poor condition that I saw Walter Reed in. I remember reading stories about improper disposal of human body parts and medical waste done by private medical facilities. Most recently I read of the US Air Force doing the same thing. And I remember reading about the Marine shot outside Togus. He had been complaining of poor treatment from doctors.
The insurance company can be a pain in the rear to deal with. So can the Social Security and Medicare Offices.
You’re kidding, right? Or else you’ve never had to deal with a for-profit insurance company!
I have had an issue with a sub rate car insurance company but not one ever with a health insurance company. I must be lucky.
Maybe this article was targeted to show DHHS in a certain light to advance a political agenda.
That could be true. I believe DHHS is getting cleaned up now under the new watch in this state. However I always am concerned when Government wants to become more involved in things like this. They dont have a very good track record of managing what they already control.
Amazing, DD clients are on wait lists for services and homeless but who screams the loudest gets the services in the end…
Glad to hear this family found their way through DHHS, and bravo to Nichi Farnham (and staff) for helping them out. Great story.
Glad Farnham helped this family, when I contacted her by 2 phone calls and a letter, no response whatsoever. Hope Dr. Gratwick wins her seat.
Well, I’ve contacted her a half dozen times about various issues using multiple venues and she’s always replied, so maybe you’re doing something wrong.
I have no idea what it might be. appears she isn’t helpful to all the people she represents. too much time living the good life, serving on boards, etc. too bad she doesn’t have to work a real job like most people in this state.
Well that’s too bad for you. She’s been extremely helpful for me, so maybe you have a wrong number. As for your accusations about her lifestyle, I’ve always gotten the impression that she maintains a very busy, hardworking life between representing us in the legislature, serving on community boards, and raising a family.
Before you embarrass yourself even further you may want to quickly google Nichi Farnhams bio. She’s an Air Force Academy grad(6 years active service) with 3 children and a husband that has served his country as a Guard pilot. Not many people in the Bangor area have given more to the community. Please do some checking before you question a dedicated public servant’s credentials.
I think you will find he will do better here and learn some things. I am just worried about some of the clients that are there, they are rough
Some friends of mine said that Maine, for some strange reason, has multitudes of people who have certain development disabilities, Down’s Syndrome and other birth disabilities and for some strange reason, nobody knows why these numbers are so extravagant. Unfortunate as this is, Maine has facilities for such people and assistance gives them rights they deserve. Some with Down’s Syndrome even work locally, like at MacDonald’s, for instance. We are happy to read the report which outlines Casey’s situation and the sacrifices his parents went through.
The high instances of disabilities are probably due to a lack of education. So many mothers in Maine smoke and drink while pregnant. They don’t know how to care for themselves properly (eat right, exercise, vitamins). I’ve seen more pregnant women than I can count smoking cigarettes.
Of course the elephant in the corner is inbreeding. There is probably a fair amount of that going on too.
Okay I’ve heard a lot of things about Mainers of which I am one, but that’s the first time I’ve heard of our inbreeding….you mean we should be reproducing with people outside of our family, I am shocked, wait till I spread the word to all my fathercousinsunclesnephews and their spouses motherauntsisterniece. That comment alone is enough to make my hackles rise. I grew up as a child of an Air Force Father, we lived in France for almost 2 yrs we attended a school 2 hours away, every student had a home town but when I mentioned mine they all wanted to know where Maine was and if it was part of the United States—–and we are considered not too bright, excuse me?!
Claire, Maine is a province in France – how could they not know this? This was the source of the State of Maine’s name originated from (I keep researching Bangor and Maine, BTW). I was not going to mention “inbreeding”, but even in Maine when and if we get up there, we hear this spoken a lot; although there is no evidence we hear that this is the problem. The comments that smoking, drinking, children being fathered or mothered by former or current drug-users are also a problem, and “dave931” had things in order. BTW, the editor only took out two sentences of my comment, but it said nothing out of context or “bad” that I knew about, but it probably did not meet with approval for some reason.
The source of Maine’s name was more than likley to have been derived from the nautical term “main land” or “mayne land”, or “The Maine”.
The french term you refer to was an attempt to change history by the state legislature in 2001 when a “French Heritage Day” was established in the state to honor the Franco-American heritage here. (Another failed attempt by the democrat majority.)
That French heritage helped build Maine into what it once was as a strong willed work ethic oriented population, but that was not a major influence in the mid sixteen hundreds.
I have never in my life, consumed alcohol, smoked , or done drugs while pregnant (Also have not ever done the before mentioned while NOT pregnant-yes I lead a boring life I have been told-but at least I am not addicted to any of those expensive health wrecking habits). I took prenatal vitamins, exercised, and as far back as the family tree can go-is proof I am not related by blood to my husband.
I prefer to blame my sons autism on vaccinations he received before they did away with mercury filled multi dose vials. And YES I do believe in vaccinations, but only with mercury free single dose vials. Why else would my son have been developing normally and reaching age appropriate milestones on schedule until 21 days after his MMR shot as a baby? After this he lost all of his language and regressed developmentally. You also have to ask why after the the big surge in autism that vaccine manufacturers opted to start making single dose-mercury free-vaccines available? You also have to ask your self why Parents can not sue pharmaceutical companies for vaccine related injuries related to autism.( lOOK IT UP IF YOU DONT BELIEVE ME)
I believe that each child who becomes autistic is due to many variables. Some in my opinion are born that way, others become exposed to mercury either by vaccines, mercury exposure in the Moms dental fillings, or other causes environmentally, and later become autistic. Before you post your opinion on this matter, you may wish to educate yourself on the topic first so that you do not come accross as uneducated.
And as far as women smoking, drinking or doing drugs while pregnant, I too find that to be a form of child abuse. It does cause birth defects. However, your statement that a large amount of children born with disabilities is due to mothers not being educated in properly taking care of themselves is a bit over the top.
maybe from poor medical care
maybe
1 in 53 boys are now diagnosed with autism, our educational system needs to get a better handle on how to help these kids with life, coping, and other important skills. Special ed funding is far too low to sustain this growing crisis
half the problem is that kids now a days get away with whatever they want. And when they are told no to something and throw a fit the get told oh no you have ” ”
So… your theory is that some kids choose NOT to speak before age 3 (a criterion for autism) beause they enjoy getting away with being nonverbal? That they spend hour upon hour staring at dust motes or flapping their hands because mommy and daddy don’t bother to say “do something else”?
Autism isn’t about discipline. Autism is a neurological disorder. We can not rewire the brain! more discipline isn’t going to help a person with autism process stimuli any better. Next time you see a child in a store throwing an all out tantrum, take a minute to consider that maybe that child has autism and is at the end of their coping limit. Give the parent a smile and move on!
what an ignorant uneducated response…..
Thank the parents for the long term care they gave their son.
Thank the Getchells, they know the requirements and are wonderful people with HUGE hearts!
They have housing unlike anything I have ever seen for special needs. It is HOME to these people. Loving and caring, freedom and independance for the abilities of the people.
WE LOVE THE GETCHELLS! Keep up the advocating and all your hard work!
Happy for the Burke Family. Hope transition goes well. Best wishes to Casey as he settles in to his new home. Wonderful story of hope!!
I am so happy for them! Like said on the last article cindy is a wonderful woman! SO glad things seem to be working out!
It’s time for these Bureaucrats to get a lesson in Compasion. It isn’t always about the Money! We owe these people with learning and social disabilities the chance to be productive members of society. They too are Human Beings. God Bless them and their Families.
Good for you folks. Who says you can’t fight city hall or the governor!
Person first language!!!!! Figure this out BDN it is insulting!
For those who do not understand what person first languge is, an example would be not using the words “autistic son” but “son with autism.” (Person [son] first, diagnosis [autism] second.
I was thinking the same thing, as a mother of a child with autism, it makes a huge difference to say “my son with autism” and to say “my autistic son” He is my son first and foremost, and is not defined by whatever disability he may have.
Exactly! The trend is slowly catching on- but this terminology should be a must in the News Paper!
I’ve never heard of “person first language”, if it didn’t have a name, would you still be insulted?? No one is trying to insult you, get over it!
This is a great story! What I am saying is introduce the story in the correct manor! You need to do a little research if you don’t know what Person First Language is. Get over it? How about you study a little and use politely correct terminology.
BDN you need to figure out how to use Person First Language! It is very insulting! Person first- disability second!
Great story but BDN you need to use Person First Language! It is very insulting!
Curious how his first night went away from home…best of luck to the family
So happy this worked out…too bad it took an enormous amount of public outcry for DHHS to do what they should have to begin with…I too have a teenage son with autism, and I am downright scared of what the future holds. I think three things need to happen:
1.Public high schools should receive the funding they need on State and Federal levels in order to provide adequate education for these kids before they graduate high school. If this is done properly, then it will save the Sate and Federal government tons of money if these kids receive the education they need in order to be as self sufficient as possible.
2. More attention needs to be given in establishing more group homes/independent living environments and close the gap in services for children with disabilities between the ages of 10 and 18 years old, and the staffing needed to support them. If the new revised number of 1 in every 88 children born now has autism, the state and federal governments need to get a plan together to remedy these funding and housing shortfalls now, because if they dont, there is going to be a point in time where this will reach a crisis level. Am I the only one that sees this????
How about we stop sending money to help other countries, and screen those in our own country to stop providing services to the people who abuse the system? We should only be sending money to help other countries ONLY after everyone in the United States has a job, has food on their tables, has a place to live, and has reasonable medical care that doesnt drain their bank accounts.
Charity begins at home-then if there is money left over, then we can help our neighbors.
(So basically what this means is stop sendig money overseas period-we need to take care of our own country first) An example…say you have a next door neighbor, and they have lost their home and their jobs…they are hungry because they have no food. Then you have someone show up at your door collecting donations to buy food for a hungry family in another country. You only have one $20 bill in your pocket at the time…you can only donate to ONE family. WHICH family would you choose to help?
3. Medical insurance companies need to stop discriminating on clients that have autsim. (Realistically they weill never do this I believe. With so many children diagnosed with autism-and if the insurance companies had to pay claims on the services these kids need-they would not be profitable anymore. But one can dream, right?)
DHHS needs to be completely overhauled…..their upper management employees are useless, of course there would be funding for this if DHHS would stop sending people who are not entitled to their services checks. Glad to see this worked out for the family.
d to see you finally got DHHS to help, but sad to see the kid toting the one thing he can relate to.. a TV… apperntly that’s the only thing I see this kid doing for 50+years.. watching TV..
This is just a great story, glad to hear everything worked out for all.