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Disabled B.C. Woman with Celiac and Other Diseases Battles Government for Care

Celiac.com 01/26/2012 - A Canadian woman is fighting a battle with the government of British Columbia to protect the services that allow her 18-year old daughter to live at home in Quesnel, B.C., with 24-hour care — much of it provided by Shelley McGarry herself.

Photo: CC--attercop311The woman's daughter, Chelsea McGarry already has a long list of challenges — Down syndrome, autism, early onset Alzheimer's disease, diabetes, and celiac disease, among other conditions.

The problem is that Chelsea turns 19 in December, at which point her responsibility for her care transfers from Ministry of Children and Family to Community Living B.C., the government agency that provides services to adults with developmental disabilities.

Shelley McGarry says she's been battling for months with Community Living B.C. According to McGarry, Community Living B.C. has refused to approve the a plan for Chelsea. Moreover, the agency has threatened to reduce the minimal care Chelsea now receives, McGarry says.

"It just turns my stomach to think of taking this public," she said. "But I don't know where else or what else to do."

Independent provincial politician Bob Simpson and B.C. Representative for Children and Youth Mary Ellen Turpel-Lafond both say Chelsea's case is a classic example of Community Living B.C.'s failure to work with families and find solutions. Instead, they say, the agency is worsening the McGarrys' situation.

"This is a young woman whose life is in crisis," said Turpel-Lafond, who has been pushing Chelsea's cause since her family since Ausgust 2011, when they asked him to advocate on her behalf. Turpel-Lafond says that Community Living B.C.'s efforts have been lacking so far.

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"I've written, I've met with the head of CLBC, I've done just about everything I can," she says. "I've said to them very clearly, 'This is a case that needs a review by you, she added'"

Simpson represents Chelsea and her family in the provincial legislature. He says that the family has followed all of the government's rules.

Shelley McGarry has thoroughly documented Chelsea's fragile medical conditions. She developed a plan with the local non-profit society, also known as a micro-board. McGarry arranged for Chelsea to receive home care for about $340,000 a year. That amount is far less than the CLBC's plan to put Chelsea in a care home capable of managing her complex needs.

Simpson called the plan that the McGarry's have offered the CLBC a 'very reasonable and appropriate plan.'

However reasonable that plan may be, the CLBC has refused to approve it. Worse still, their proposed alternatives would either be unsafe, or cost up to three times what it would to keep Chelsea at home, Simpson said.

Simpson says that he suspects the CLBC is punishing Shelley McGarry for her vocal and tireless advocacy on Chelsea's behalf. Simpson adds that he also suspects  that officials, as he says they have done in other recent cases, have lost sight of Chelsea as a person.

Both Social Development Minister Stephanie Cadieux and Community Living B.C. have declined to comment on specific cases. However, Cadieux said in an interview that she is aware of the file, and that she has appointed a new client support team, which she hopes can resolve the matter.

"I agree that it needs attention," Cadieux said, adding that the new team includes a number of "high-ranking officials" from the Ministry of Social Development, and the Ministry of Children and Family Development.

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Exactly what are the advantages of taking ganja?




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Love reading this story as it is rare (I think) to find someone else with the swallowing issues! Hate that this is your experience however! My daughter also has the swallowing issues and it got so severe (we had no idea about Celiac) that she had to do intensive therapy to learn how to swallow again. It got better but never resolved. Once she went gluten-free it got way better though a recent exposure to oats caused it to flare up again. Do you mind me asking - Has your swallowing issues 100% resolved being gluten-free? Does it ever actually go away and stay away or will it always pop up from time to time?

I will say what everyone else says and get tested again with the endoscope and biopsy to confirm, you will need to be on gluten for 12 weeks for blood test 2 weeks for endoscope at least a slice of bead a day. The thing about celiac is many symptoms can be quite minor, hell even before I had my MAJOR symptoms show I had some of the other issues show up in my every day life and I just thought it was normal. Regardless if you keep eating gluten with celiac disease it will slowly eat away at your body internally til it does become a problem. Celiac is a autoimmune disease that reacts to the gluten proteins, and has misdirected attacks on your own body internally by mistake trying to kill the gluten. Now the damage can lead to all kinds of other auto immune diseases, random allergies, food intolerance, and even cancer. I suggest if you do have it, stay on the gluten-free diet, your just basically changing brands there are many gluten-free food versions of everything now days. Be thankful you got this early, I developed issues with dairy, corn, peanuts, and a whole list of others along with another autoimmune disease Ulcerative Colitis that makes it so I can not eat sugars or carbs or my intestines swell. Getting on a gluten-free diet before your damage progresses will not only keep you healthier for longer, and let you live a pretty normal life but also save you from this pain and very limited diet if the damage progresses too much. As to your fatigue, you changed over to gluten-free diet, you stopped eating a bunch of the Fortified foods, and depending on the route you took of either whole foods ore more processed foods. You could be eating to many empty carbs, starches, and not enough nutrients. OR if you took the whole foods approach you be lacking in your daily calorie intake or not the right ratio of nutrients. You might have to supplement a few of them.

REALLY odd call out here, I am attending a anime convention called A-Fest in Dallas come August, I need someone to split the room with it who is gluten-free. I take extra precautions, I COOK all the food, bring only CERTIFIED foods into the room, The room will be Gluten Free, Corn Free, Dairy Free, Peanut Free. I am trying to find someone to split the room cost with, that would be safe to be around I CAN NOT AFFORD to get sick at one of these things, it is one of my few joys left in life and get very paranoid around them. So I need someone who is also gluten-free to make sure the room stays safe (YES I have done with with a non celiac with the rules down and well stuff happens so not chancing it). Room split is food coverage comes to $400 if it is just two people. 4 day convention, I will arrange a meal plan around your diet as long as it is free of my allergens. I will also provide various snacks, baked goods, and even stuff to take home with you. https://animefest.org/ ^Convention info.

Hi Jennifer, This thread might have some information that would help you. Your doctors are pretty lame IMHO. Perhaps you can find a celiac group in your area that has local meetings for support. They might also suggest a different doctor who knows how to treat celiac patients.

The initial reason gluten free diets came about was to treat a condition called celiac disease?an autoimmune disorder known to affect at least three ... View the full article