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diabetes and Child Protective Services

Discussion in 'Parents of Children with Type 1' started by YJC, Aug 16, 2012.

  1. YJC

    YJC New Member

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    Hello Everybody.
    I am a Social Worker from California. I am here "off the clock" to learn and develop better social work practices for families who live with diabetes. In the county I serve, there are few resources and little knowledge regarding the complexities of diabetes. I have become the informal "County Diabetes Social Worker." Unfortunately, I did not receive any training specifically for diabetes and social work.

    I work at a Child Protective Services. While many people have negative views of CPS workers, I am not here to judge or criticize anyone. I am passionate about developing an effective and helpful model for our families. I am here to learn from your expertise, if you would be willing to help me. I would like my county to have a better understanding of family safety and well being when they are affected by diabetes.

    If you have opinions, suggestions, criticisms, etc. about CPS issues related to Diabetes, would you post them here?

    Many children with diabetes come into the child welfare system because of medical neglect by their parents. CPS may initiate an investigation. CPS may petition for Court ordered services for the family. What does that mean to you? What does CPS "help" and "support" mean, vs. CPS "policing" families? If a CPS worker could help a family, what help might be asked for? What should child welfare workers know when working with families with diabetes? What do you think medical neglect for children would look like?

    Even if you have no experience with CPS, I welcome your opinions.
    Thank you for your thoughts.
     
  2. sooz

    sooz Approved members

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    I have no experience with CPS but I do live in California. First, I would like to thank you for coming here to seek information, and for doing what at times must be a horrific job in order to protect children and to help families.

    The most important thing you need to know about type 1 diabetes is that it is not possible to tell if a child is being medically neglected based solely on their blood glucose levels. Type 1 diabetes, by its very nature, is virtually impossible to control 24 hours a day. The most diligent parents can have a child who may have blood glucose readings from 20 to 500 at times. This does not mean they are neglecting their child. The child may have been physically more active which would cause their blood glucose level to drop, or having a growth spurt, or fighting a virus, etc. Insulin needs in a type 1 child can change daily, and insulin dosage is an art as much as it is a science. No two type 1 children will react the same way to the same insulin protocol. We may all shoot for a perfect 100, but it is just not possible to expect the child will stay in a 70-130 range all day every day.

    Further, know that type 1 and type 2 diabetes are not the same. Type 1 diabetes is an auto immune disease where the pancreas's ability to produce insulin is permanently destroyed. There is no known cause for type 1 diabetes and as yet there is no cure. Nothing a parent did caused a child to get type 1 diabetes and nothing they can currently provide can cure it. All people with type 1 diabetes must take insulin to survive. Type 2 diabetes is a metabolic disorder that can sometimes be controlled solely by diet and exercise, but may require medicine as well. Never refer to diabetes without indicating whether it is type 1 or type 2. They are hugely different illnesses.

    CPS can help families with type 1 diabetes by remembering that having a child with a chronic, life threatening illness is stressful. This is particularly true in a single parent home. Sleep is sometimes sacrificed as the parent is testing their child in the middle of the night, or treating their child. Insulin and other diabetes supplies are expensive. Help the family to get the medical supplies they need. Sometimes families do not receive sufficient training at their diagnosis. CPS could supply access to training or to literature if the parent indicates they need more training. Lack of training is not a fallacy. It frequently is reality. Current best practice for treating type 1 diabetes requires carbohydrate counting so the insulin dose can be calculated. The math skills needed are high. A food scale, a calculator, how to read nutritional information on labels, ?and access to the carbohydrate levels in food is something you could discuss if the parent seems lost about those issues. ?You can advocate for the child in school to make sure the school provides appropriate medical assistance. In California, that requires that an RN be at the school to give insulin injections.

    Type 1 diabetes is a complicated disease that can be managed but not controlled.
     
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  3. sooz

    sooz Approved members

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    Medical neglect might be indicated if there is not sufficient food or medical supplies present for the child's needs, or if a child who is too young is left alone in the home to care for themselves.
     
  4. nanhsot

    nanhsot Approved members

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    What I would like understood by those on the outside looking in is that sometimes having widely swinging numbers does not mean the disease or child is being neglected; numbers in the 300s happen even with diligent parenting and are only a problem if not being directly addressed/treated.

    Medical neglect would be withholding insulin or testing supplies; not having on hand appropriate treatment for lows such as glucose or candy set aside for that purpose. I work in the medical field and have had to report to APS for diabetic mismanagement. What I reported was family not taking numbers regularly and chronically in the 400s+ seriously, leaving a person with poor memory alone who did not test with regularity (and lied to us about it, meters don't lie), and supporting a very poor diet in a type 2 diabetic. In our case APS did nothing and the situation has not changed.

    For me this is a tough issue because from the outside sometimes a parent can work very very hard and diabetes wins the battle. But sometimes a parent can virtually ignore things and diabetes does OK. So I guess the most important thing I'd like CPS to know is that diabetes is a difficult beast and families first and foremost need education, support, and financial assistance when appropriate. Stress is high, especially after diagnosis. It is overwhelming for the best of families, add in lack of education, poverty, etc, and it's easy to see how families could fall behind in management. Education is key.

    I think it's admirable that you have asked for parental input on this.
     
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  5. joy orz

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    I also think it's important to know that there are many people who are "diabetes police" who think they know about diabetes, but in fact know just enough about the disease to be dangerous.

    A good teacher friend of mine was convinced a child in her class was being medically neglected because the child had erratic blood sugars and the parents sent the child to school with a submarine sandwich for lunch. She was convinced the parents should put the child on a low carb diet.

    It took me hours to explain that blood sugar is greatly impacted by things like excitement, growth spurts, exercise and stress. And that children NEED carbs to grow.

    So if you get a report of suspected medical neglect, the FIRST call you should make should be to the child's endo team. Ask the endocrinologist and nurse educator how they think the family is doing. What gaps do the team see?

    If you look simply at my own child's blood sugars, you will see a child with huge swings up and down, a child who ends up in the ER at least once a year with ketones, and a child who is often "underweight" on the growth charts.

    If you spoke to our endo team, you will learn that we are one of her model patients, and that she routinely gives newly diagnosed families my contact info to act as a mentor.

    If the endo team also feels the family is struggling, see if they can be paired with another family with a child with diabetes. For us in the beginning, that made a huge difference.
     
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  6. Christopher

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    Very nice summary and explanation.

    To the OP, I am attaching a link to a guide that might help parents of school aged children better navigate issues with the school and diabetes:

    http://www.ndep.nih.gov/media/Youth_NDEPSchoolGuide.pdf

    I would also think you should have a list of local Pediatric Endocrinologists that you could refer the children to.

    The fact that there are not programs and resources already set up and you have to come here for information is sad, but glad you did.
     
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  7. Beach bum

    Beach bum Approved members

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    Exactly. Mainly this is because they had a family member who had diabetes and had x types of complications. What they neglect to think about is that A)There is a difference between T1 and T2 B)Technology and care has improved greatly in the last 10-20 years C)Because they are in position of authority they think they know it all


    And this is causing a major disservice to both the family and child. Yes, very sad.

    I think you said what we all wanted to say. Nice summary.

    I think the big thing you need to walk away with is that diabetes is not just black and white. In fact, it is a very, very large grey area. There is a famous saying here YDMV. Your diabetes may vary. No two kids are alike. What works for one, may not work for another.

    Thank you for taking the time to come here and learn.
     
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  8. Sarah Maddie's Mom

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    Anyone else think it's atrocious that a person charged with evaluating child neglect with regard to a chronic and complex medical condition has been given NO TRAINING whatsoever by her/his employer and is having to resort to asking parents what to look for?

    To the OP, while I commend you for asking, I think that if you are being put in the position of being the as hoc expert on children and Type 1 then you must demand established protocols from your superiors.

    We could be a great source for helping you vet those standards once established, but to think that you might be making court mandated service decisions based on the opinions of a few parents found on the web, is simply unacceptable.
     
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  9. hawkeyegirl

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    Sarah, it is too bad, but I'm unsurprised. CPS is underfunded EVERYWHERE, and there is simply no money for this sort of training on various chronic diseases a case worker may encounter.

    Generally, CPS workers will rely on medical professionals' opinions when they need to make a judgment call about a medical condition. We all know that there are good endos out there and some not so good ones, so any education this worker can get here to help her tell the difference is good in my book. ETA, I think we can also provide her with a parents' perspective about what would be helpful to a struggling family, whereas that it is not most endos' area of expertise.
     
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  10. Sarah Maddie's Mom

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    Yes, there's no doubt that our perspective is more relevant to the 24/7/365 experience of living with Type 1, yet, I cannot see how any case worker could make an informed decision about a child's actual level of risk based on a spot investigation and armed only with the input of a few of us here.

    I get that it's better than nothing, but I still think it stinks.
     
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  11. sheeboo

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    Doesn't the ADA or JDRF have advocates that go to schools to train/educate staff? I'm sure I've come across mention of that. Perhaps a call to the offices local to you might lead to some kind of additional support. Likewise, I'd call your local children's hospital. Maybe they'd let you attend some of the parental Ed classes (that might not fly with HIPA) or meet with a CDE or two for a few informal conversations.
     
  12. Lee

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    It does stink! I had a friend who had CPS called on her all the time by the school nurse because her child's numbers would swing. She said the nurse called CPS almost anytime there was a number over 250...

    I think the best thing would be to shadow at a Pediatric Endo's office.
     
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  13. nanhsot

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    My feeling from reading her request is that she's looking for a springboard here, and not that our words are LAW or anything. I'm hopeful (maybe too optimistic??) that she's here to begin more extensive research and education.

    I LOVE that she wants parental input, vs only asking for medical input. I DID have a pedi endo tell my son that his wide swings were unusual...(while the CDE practically rolled her eyes behind the back of the MD). I think it's a good and positive thing that she's wanting to see from our viewpoint, but like you I sincerely hope that we are only being asked from a parental angle and not the end all word!
     
  14. steph

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    Glad you are looking for more information here. I am a social worker in TX, and while I do not work for CPS (called DFPS here) I work exclusively with families involved in the system. I am also the mother of a child with T1D. I second everything that Sooz said. I would add that a child should remain in the home while the investigation is ongoing and that every attempt should be made to keep the case in family based services rather than a removal (unless there are other non D related safety factors involved). A relative or foster placement starting from scratch will have much more difficulty regulating T1D and the child's BS will probably become even more erratic and difficult to manage due to stress.
    The endo team is helpful in evaluating how the parent is doing, BUT sometimes endo teams give bad advice to parents. It would be wonderful if your T1D team could consist of a contract endo who could review a child's chart and weigh in. If an endo team did a poor job of treating a child, they will be more likely to throw a parent under the bus than admit to any wrong doing, so having an impartial party that understands diabetes would be very helpful IMHO.
     
  15. Lawana

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    In addition to the excellent responses you have been given, I would like to reiterate that a family can be *doing* all the right things and still have poor outcome. It is entirely possible to check blood sugar 4 times a day (as trained), inject a long acting insulin once a day and short acting insulin with each meal (as trained), and yet have wildly fluctuating blood sugars.

    One factor that greatly influences some families is the fear of insulin. After watching your child endure one or many serious low blood sugar episodes, it can make keeping on top of increasing insulin needs very difficult. The parents know that too much insulin will result in a low, and can be extremely reluctant to give increasingly larger doses, resulting in high blood sugar almost continuously.

    My advice would be to look at the actions taken by the family, rather than just the results. If their meter shows 4 or more blood glucose checks a day and they are giving shots or pump boluses for meals, then the family is doing all they were trained to do and it is not medical neglect. Dosages may need to be adjusted, and they may need further training in how to recognize when changes are needed, but they may be doing everything they were told to do.

    The difficulty comes, of course, when you cannot establish a history of necessary actions. What to do when bs is checked only twice a day, and boluses (shots or pump delivery) are very frequently missed. I have no idea where to draw the line. But I totally agree with what Lisa posted about removing a Type 1 child. It's hard to imagine the child's diabetes management would improve without a specially trained and experienced foster situation.
     
  16. MomofSweetOne

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    Even a situation where the tests are not occurring as they should doesn't necessarily mean that the parents are the problem. Maybe the kid is avoiding diabetes as part of the teen years and the parents are trying their best to get them on board. I've read of such situations. In a case like that, counseling would be needed but may or may not be effective. But, I've also read of and known parents that haven't checked the meter in 6 months, believing what their kid is telling them for numbers. I'm not yet dealing with that age, but this is an area that shouldn't be child services involvement but an active, complete endo team and family team working together.

    Another area of diabetes that the OP should familiarize herself/himself with is that of diabulemia. I think I've read it occurs in 39% of diabetic teens and is very difficult to overcome.
     
  17. caspi

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    Well said, Sooz. To the OP, I appreciate you taking the time to learn more about Diabetes. You are a credit to your profession.
     
  18. sooz

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    I would like to address the question of what "help" and "support" would look like vrs. "policing" on the part of CPS. If a family is perceived to be struggling, I would suggest that they be asked what help they think would be helpful before immediately concluding, possibly mistakenly, what is lacking in the home. Caring for a child who has type 1 diabetes 24/7/365 is a tremendous load of responsibility. There is no day off, ever. Many families have no outside support or resourses whatsoever. Relatives may not wish to, or be able to, provide help. A single parent, especially one who is already in CPS's radar because of poverty, or suspected neglect, is almost certain to feel overwhelmed at times.

    Depending on the age of the child and how many other children are in the home, in addition to the suggestions that were made in previous posts, I wonder if it is possible to help the children enter preschools that may have to be subsidized by the State. I don't know the current status of Headstart programs, but I can see how giving the mother of small children some breathing room would be helpful.

    Additionally, there are specialized summer camps for children with type 1 diabetes. Many offer full ride scholarships. Starting around age 7 or 8, going to diabetes camp in the summer is a win win situation for all concerned. The parent gets a break, the child learns independence, and just plain has fun.

    So, my picture of support vrs. policing does not just focus on the child with type 1 diabetes, but rather on the family as a whole. Whatever can be done to relieve stress in the home will ultimately help the parent care for all of the children better, including those who have diabetes. I can see that support taking the form of financial assistance, medical assistance, educational assistance, respite care, counseling, employment assistance, etc, depending on what the parent indicates the needs of the family are.

    I think California is in a sorry state right now financially, and programs are being cut right and left. Social Workers must be wringing their hands at the resources that are left open to them to offer. It is important for all of us to advocate for programs that are lifelines to families in crisis.
     
  19. sooz

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    I would add nutritional assistance and budgeting assistance to the list above. Educational programs for the parents could be so helpful if that is what is needed.

    Here is a partial list of some resources in California:

    http://www.dlife.com/diabetes_resources/saving_money

    http://campconradchinnock.weebly.com/resources.html

    http://www.padrefoundation.org/about.html

    http://www.campangels.com/about.us.html

    http://diabetescamps.org/

    http://www.ncdiabetesgroup.org/

    http://www.dlife.com/diabetes_resources/diabetes_camps/california

    http://www.diabetes.org/

    http://www.jdrf.org/
     
    Last edited: Aug 17, 2012
  20. Knittingfor4

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    I will jump in with my story here: I took my 4yo to the hospital for a low with a grand mal seizure. When I got home and read the discharge papers I called my team in tears. The hospital called us "noncompliant" and said if we showed up again they'd call CPS. Turns out they were going to call then and there but they called my team first and they said not to. That we come to every appt, do everything they tell us, and are good parents. I was a nervous wreck! So I agree with everyone here, that you can be doing a good job (or what your team tells you to do) and not have a good result.

    Also, not every team is fantastic. I spent all of last week here at CWD and learned more than I had in 4 years, and my daughter's numbers are fantastic most of the time now. No thanks to my team. So there's another angle for you. Good luck ;)
     

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