Petition calls for shorter wait lists for children

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Daniel MacEachern
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Woman told it will take up to 20 months to see developmental physician

A St. John’s woman is furious it could take nearly two years to get her son’s behavioural problems diagnosed — and even longer for treatment.

Darlene Brown said the behavioural therapist she consulted believes her son is showing signs of attention deficit hyperactivity disorder, sensory problems, anxiety and obsessive-compulsive disorder.

“My son continuously rocks,” she  said.

“He doesn’t obey, he doesn’t pay attention. He can’t focus. … He licks his fingers and he bites his hands almost to the point of blood.

“And all this stuff is progressing. Licking his hands and the aggressiveness is getting worse. This morning he tried to hit me with an umbrella.”

Brown said she’s concerned about her son starting kindergarten in the fall, and she hopes to have a

handle on treatment for her son before he has trouble in school.

“I think it falls under the spectrum of autism. I’m not quite sure. I’m new to this,” she said. The problem is, she said, she’s been told it can take up to two years just to get her son diagnosed, let alone start treatment.

“When I contacted the Janeway, the manager there, she told me it’s a two-year waiting list to get in to see an (occupational therapist) and maybe up to 20 months to see a doctor to get diagnosed,” she said.

“But I’m after learning now that’s just to get in there. To get treatment, it’s even longer. You’ve got to get diagnosed first, and then treatment’s longer. You can’t get any headway anywhere. It’s all red tape.”

Eastern Health declined a request for an interview, but an email from spokeswoman Zelda Burt said the wait time to see a developmental pediatrician is about 16 months.

Depending on a child’s symptoms, the doctor can refer a child for a full assessment to the province’s autism team, or refer the child to other treatment based on the diagnosis.

The wait list to see an occupational therapist as part of the autism team is about one year after being seen by the developmental pediatrician.

“It should be noted that there is no wait time for a child diagnosed with autism spectrum disorder to receive applied behavioural analysis home therapy through Eastern Health’s Direct Home Services,” wrote Burt.

“This is an intervention program for children specifically diagnosed with ASD (autism spectrum disorder), and may include supports such as one-on-one therapy to enhance social and communication skills, and to help improve behavioural issues. Children can be referred to this intervention program by a pediatrician.”

Seeking answers on wait times, Brown called her MHA, Dan Crummell, who said he’d look into it. Brown said when he got back to her, he confirmed that the wait times she’d been told were accurate.

“I said, how are you going to help me? He said, ‘You can do three things. See your family doctor, and get a referral’ — which I’ve done, I’m waiting on an appointment from my family doctor. He said keep doing what I’m doing, and keep up doing what is best for my family, that was his three suggestions.”

Brown said she told Crummell she wanted him to speed up her referral.

“I said, ‘My son is getting worse every day.’ He said, ‘I can’t do that.’ I said, ‘So what can you do for me?’” said Brown. “I said, ‘So actually, you can’t do anything for me as an MHA.’ He said, ‘I have a job to do.’ I said, ‘Yes, and part of that is advocating for me.’ And then when I started saying, ‘You’re doing nothing for me, basically,’ he started laughing at me. That just made me angrier.”

Brown says it shouldn’t take longer than six months to get a child in to see a developmental physician.

“We need more funding for these kids. There’s more kids being diagnosed every day,” she said. “They have special needs, they’re being taken out of school because of behavioural problems, and the reason why is half is not being diagnosed fast enough and quick enough to get them the help they need. My son’s going to kindergarten. If he’s got to wait two years he’ll almost be in Grade 2 before he gets help.”

She’s started an online petition earlier this week — at gopetition.com; search “wait times for Janeway” — and garnered more than 200 signatures in the first 24 hours.

“There’s a lot of people, obviously, that are going through the same thing I’m going through. Some are just afraid to speak out,” she said.

Crummell declined an interview, saying in an email he was busy in meetings on Thursday.

“While it would not be appropriate for me to speak to a particular case, I want to assure my constituents that any time someone from my district comes to me with an issue, I work hard as their elected representative to help them resolve the situation,” he wrote in the email.

“Nothing is more important to me than being responsive to the needs of the people of my district. I take these responsibilities very seriously.”

 

 

Organizations: Direct Home Services

Geographic location: Eastern Health

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  • understand
    March 13, 2014 - 07:36

    My daughter is an outpatient at the Janeway Rehab and the quality of services she receives is fantastic, meaning the therapists and professionals are amazing. The waitlists are terrible though. Even when you get your child in to see a speech therapist you only get "blocks"of eight sessions and then get put back on a waitlist for approximately six months. When you have a child that gets so close to making a breakthrough and then care is on a break..that is very frustrating. I completely understand where this mother is coming from.

  • penny Allderdice
    March 10, 2014 - 20:28

    Were Dr Norah Elphinstone Browne alerted to the situation today for our preschool children on wait lists, I believe she would not only turn over in her grave, but also climb out and hasten to chastise our politicians and executive directors who place children's developmental needs at the bottom of their "to do" list. Years ago, when she recognized the unmet need, she established the child development clinic at the Janeway. Today, in 2014, where is our Norah Browne in our provincial government cabinet, and in our Eastern Health administration? I have no doubt but that in childhood, some of our politicians and executives were once the recipients of Norah's compassionate pediatric care. Might they remember? She told of one terribly stormy winter night when she was called to come to treat a child in its home. She knew the father was better equipped than she to tackle the deep snow in his 4 wheel drive vehicle, and asked if he might bring the child to her. His response was, "You wouldn't expect me to come out through such a storm, would you?" Today, where is her legacy - whom of our "powers that be" will brave the storm to provide for the needs of pre-school children such as the son of Darlene Brown? 1987 Dr. Norah Browne, clinical assistant professor of pediatrics, received the Therese Casgrain Award from the Honourable Jake Epp, Minister of Health and Welfare, in a ceremony at the Hotel Newfoundland, Feb. 6. This award is made annually to two Canadians whose pioneering spirit, social commitment and persistent endeavours have advanced a social cause and increased the well being of their fellow citizens. 1987 Dr. Norah Browne was named Citizen of the Year for the City of St. John’s. ·

    • Steve Skaar
      March 30, 2014 - 23:56

      Penny, glad to see you in the fight! Thinking of you this evening, please contact me, steve.skaar@gmail.com

  • Been there
    March 07, 2014 - 14:13

    I feel for this mom. My son was diagnosed at the age of 2. We only waited 3 months to see peds which is awesome....then came everything else. If it wasn't for doing everything privately while waiting on the list, my son would not be in grade 2 today. He was 4 when we finally got into SLP and that was constantly calling looking for a cancellation. He was 4 1/2 before getting into OT I done the same with them. This mom should consider keeping her child out for another year; once they enter school it is worse. We are in a constant fight with the school for supports that OT put in place. No help in the class because "there is always someone in more need".... It's a battle. Without a psychoeducational assessment to basically have grounds to force them they refuse but won't perform one because he is only in grade two!!!! I now have to pay privately for one at the cost of $2500.00! Do what you can before entering the school system. Good luck.....

  • My heart HURTs
    March 07, 2014 - 13:13

    I knew someone was going to get here and have something bad to say... "furious" mother and her precious. Come off it have a HEART!! It's hard enough to know that your child is going to have a hard life to live.. Let alone to wait years before getting any help. Please have respect. If you wants to B**** about something then do so about how government is wasting momey. In my opionion if it's the money then Government should stop dishing out money to people on welfare... why not make them work for thier money even if it's just helping out in the community or open a daycare for thier kids so they can work to make money. I rather see the money government gives them to go towards a daycare for them so their parents can work. Sure that will free up a lot of money for government and give the kids a healthy start in life!!

  • Gekko
    March 07, 2014 - 12:25

    I've said it before and I will say it again; Eastern Health does a relatively good job with the resources they have. If you want more then everyone will have to pay substantially more tax, and those of us who pay the most tax to begin with aren't necessarily willing to pay more because of one "furious" mother and her precious.

    • Willi Makit
      March 07, 2014 - 13:40

      YOu can't see the forest for the trees. Earl intervention and treatment will actually save the taxpayers money in the medium and long term. If you want to make a tax issue out of it by all means, fill your boots, but if that's what it takes to rile you up, you should be ''furious'' as well that the government is wasting your money by not directing it where it will produce the greatest benefit.

  • My heart HURTs
    March 07, 2014 - 11:53

    I feel your pain and did not realize so many people were in the same boat. I can't believe that the government has not done anything about this. Obviously it’s not a new issue with the wait times. It’s so sad to see and have to go through. I have 3 kids and one of them is in the process of trying to get diagnose with something for her delay in development. But it’s a slow going… 12 – 18 months to wait and see one specialist then to get to get another 12 – 18 months wait to see another specialist. And believe me I don’t think they even look at what the other specialist has to end say about my child. Then to get to see them and it’s only for ½ hour how is someone supposed to see how your child acts in a ½ hour. My child starts preschool this September and I feel so much pain for her because I know school is not going to be that easy for her. I’m glad you are speaking up and that people are putting suggestion out there for things we can do to help our kids. I heard about avoiding certain foods because of the dye in them now I know thanks to Melanie. I will do a little research on the Feingold Diet. I do take my daughter to a private speech cause she is still waiting to get in at the janeway but by the time she gets in there she will be started school and she will not get the help at the janeway anyway. I always remember people talking about the 18 month vaccine and should you or should you not get it because they believe it causes autism. I got it for my kid and I just find it so funny now that I’m getting someone calling me about my kid’s record of immunization all the time. I finally got the chance to call her back last night and all she wanted to know was when she got it, and what the vaccine were for. The lady says she was just randomly selected but if she was just randomly selected then why not calls someone that will return your call. And it was about 18 months that we started to notice things with her and started getting her on waiting list for things. It’s now 2 years later and we are still waiting to see specialist. It’s a SIN no kid should have to wait this long. And if anybody gets on here saying SUCK it up or you should of took better care of yourself when you were pregnant (I did so that is not my reason for my kids disability) or anything negative about a kid with delays in development you should not be in this world. And if anybody got any other ideas or places to get help for kids please post them.

  • melanie
    March 07, 2014 - 10:57

    I feel your pain with regards to the wait times. But look for some alternative treatments while you are waiting. My daughter was diagnosed with ADD and we are non medicating her. She follows a diet which helps with the symtoms. It is called the Feingold Diet. It is worth the red and even if you dont do it fully just changing some simple things make the difference.

  • EDfromRED
    March 07, 2014 - 09:49

    Sorry kids and parents, your just gonna have to suffer. Nalcor needs all our money to go to them, not to waste on Healthcare! We'll just have to trust them cause Bill 29 says we don't deserve to know the facts.

  • Lisa
    March 07, 2014 - 09:04

    It is not only when Eastern Health is involved does the ball get dropped. Go ahead a little further, once you receive these services, after countless months of waiting, they give you ABA, Speech, OT, etc. The moment your child starts in school, those services are removed and then you are waitlisted through the English School Board. Picture if you will (my situation), my 2yr old having several developmental delays, no speaking, and other medical concerns (heart defect). We went on a waitlist, and waited it out for 18mths (THINK of the time and learning wasted). He is then given direct home services, speech therapy, occupational therapy and the services of a developmental pediatrician in the June month BEFORE starting school in September. Come August, they stop booking your apppointments, because you will fal under the school district. We then DELAYED our sons school start, held him back a year so that he would get a full year of medical services from Eastern Health. He started school a 5 years, 10mths old......KDG. By Grade 2, he is still waiting for speech therapy to be picked up, ABA services have been removed, we have been through countless tries of medications, psychologists and techniques to help him "cope" with the school's "inclusive" environment.....and he suffers to the point that it is "medically, mentally and safer for him to be removed from the school environment and home schooled." Now WHAT??!?! Waste of VALUABLE developmental time for our children and the families that are trying to work through the system!!

  • Treshana Gosse
    March 07, 2014 - 07:38

    There are hundreds of families in this same boat. My husband and I took our two year old out of the province last year based on our suspicions that she had Autism. She was diagnosed in Nova Scotia. We also paid a private Speech Language Pathologist to assess her speech since we felt she was very behind. Our child has a diagnosis of Autism, a severely/disordered speech delay and yet Eastern Health feels it is completely acceptable to make her wait. We live in the Clarenville area. She has been waiting almost a year for SLP services and she will continue to wait nearly two years. The prevalence of Autism continues to rise and yet the services for all persons on the Autism Spectrum (regardless of age or level of functioning) continues to fail to meet the demand. We must do better. As a province we must not strive to catch up to the national average. We must strive to provide services to this population of individuals much faster and more efficiently than we ever have before. If the province is failing to meet the needs of the individuals who have already been diagnosed, as prevalence increases, the demand for services will never be met. It is outrageous. We are talking about the development of children. We are talking about meeting a child's need to exist, deal with sensory issues, and to learn how to communicate effectively. It is thoroughly disgusting. This is not the time for government to spew stories about reviewing services this is the time for a solid action plan far reaching into the future. From what I can see there is no such plan. So, good on Darlene and any other mother, like her, who is speaking out. Because Darlene you are your child's best advocate. Do not stop fighting. It will get better.

  • Treshana Gosse
    March 07, 2014 - 07:37

    There are hundreds of families in this same boat. My husband and I took our two year old out of the province last year based on our suspicions that she had Autism. She was diagnosed in Nova Scotia. We also paid a private Speech Language Pathologist to assess her speech since we felt she was very behind. Our child has a diagnosis of Autism, a severely/disordered speech delay and yet Eastern Health feels it is completely acceptable to make her wait. We live in the Clarenville area. She has been waiting almost a year for SLP services and she will continue to wait nearly two years. The prevalence of Autism continues to rise and yet the services for all persons on the Autism Spectrum (regardless of age or level of functioning) continues to fail to meet the demand. We must do better. As a province we must not strive to catch up to the national average. We must strive to provide services to this population of individuals much faster and more efficiently than we ever have before. If the province is failing to meet the needs of the individuals who have already been diagnosed, as prevalence increases, the demand for services will never be met. It is outrageous. We are talking about the development of children. We are talking about meeting a child's need to exist, deal with sensory issues, and to learn how to communicate effectively. It is thoroughly disgusting. This is not the time for government to spew stories about reviewing services this is the time for a solid action plan far reaching into the future. From what I can see there is no such plan. So, good on Darlene and any other mother, like her, who is speaking out. Because Darlene you are your child's best advocate. Do not stop fighting. It will get better.

    • Colleen Bennett
      March 07, 2014 - 20:17

      I live in Australia, had a son who was Add , I had to seek all the treatment my self to help my son , he was aged 6 when he went on medication, Ritalin , His grades improved greatly, he took 1/2 at nine am that got him through till lunch time, then other half at 1 pm after lunch , and that got him to end of school finishing time at 3. 15 pm. I know what you ladies are feeling here, it was many visits to doctors and speech therapy and changing diets before I made the decision of medication, My son is now 30 years old, has a very high paying job in civil engeering, earning $140 K au per year and rising yearly,.He stopped meds when he was 17 and finished school, has never looked back , always needed remedial help with schooling, but I never gave up, was single parent from his age of 3 years, you can do it to just never think you or they cant improve ,they can, hard work will pay off in the long run, yes give extra schooling at home , if you live near other mothers who have problems with their kids ,, form your own group and work on this together. Good Luck to you all , and God Bless you for being Super Mums for your Kids. xx

  • Krista Trask
    March 07, 2014 - 07:27

    As a parent of an autistic child I applaud Eastern Health's programming for children when diagnosed... My problem with the system are the long wait lists. Time is of the essence when it comes to a child's diagnosis and treatment and therefore do not understand why these wait times are so long. As a parent it is extremely frustrating knowing that there is something wrong but have to wait a year or more to get any kind of diagnosis and help. Maybe there is a need for some private health care if these wait times can't be lessened. It is the children that suffer from this delay.