Coping with Diabetes

1. Coping with Diabetes Kerri Brazzel, LCSW Alexis Young, LMSW

2. Diabetes Team at ACH • Endocrinologist • Diabetes Educators • Nutritionist • Social Workers • Child Life • Bedside Nurses

3. Diabetes Team Role in Overall Adjustment • Team works together to: • Support, Educate and Provide Resources/tools • Assess barriers and strengths to fill in any gaps • SW conducts assessment of psychosocial, developmental, behavioral history

4. Social Work Role on Diabetes Team • Assess: coping, adjustment, stressors, current utilized resourcesand resources available • Emotional Support: at initial diagnosis, during hospitalizations, ongoing through outpatient clinic appointments • Advocacy: with medical team, schools, community settings, obtaining resources, insurance, legal issues • Resources: basic needs, other healthcare/mental health needs, financial resources

5. What Happens at Diagnosis? • Families notice increase of symptoms, yet typically do not associate them with the possibility of Diabetes • Are often seen at PCP/family doctor for these symptoms and receive the initial diagnosis at the same time being told they are being sent to ACH for admission. They often arrive feeling: ●shock ●sadness ●guilt ●fearful ●overwhelmed ●anxious

6. Emotional Impact • A reaction to a diagnosis of a chronic illness can be similar to a grief response (shock, denial, anger, bargaining, depression, acceptance) • Family’s hopes, dreams, plans for the future may change or the view of them change- families grieve this change and continued to move through grieving “stages” • Establishing a “new normal”-adds anxiety to the grief.

7. Ongoing Assessment of Coping and Adjustment to Illness • Several adjustment phases and transitions as family changes, child grows and develops • Previous and current stressors at the time of diagnosis as well as on an ongoing basis • Development stages (toddlers, school age, adolescence) • Can families problem solve appropriately, re-frame, normalize, have family and social supports? • Increased risk for depression and anxiety

8. Things to Watch for: • Persistently decreased mood or changes in mood • Irritability • Social Isolation • Change in sleeping habits • Decrease in school performance • Weight loss • Changes in eating habits, not eating well

9. What we Can Do • Be Supportive, aware of needs/concerns and creative in interventions to meet individuals and families needs. At School: -help a child be discreet with care in school -talk with school counselor about support groups at school -Educate teachers on Diabetes and children’s needs, sensitivity to needs (504 Plans) -refer to Diabetes Team

10. Resources • Local Counseling agencies if adjustment issues persist or concerns for depression arise • Online resources and support: American Diabetes Association, childrenwithdiabetes.com • Support groups (might be for child, parents) • Ongoing supplemental education • JDRF • Medical Legal Partnership-ACH • Local Financial and other basic needs agencies • Financial Counselors-ACH • Prescription Assistance Programs

11. Advocacy at School: Written Plans • Diabetes Medical Management Plan for School (School Orders): health care plan from Medical Team explaining medical procedures and needs that take place at school. • 504 Plans/IEPs: care plan designed by school personnel and family explaining the modifications and accommodations that need to be made for a particular student.

12. 504 Plans and IEPs • Section 504 (American with Disabilities Act) prohibits discrimination on the basis of disability in programs or activities that receive Federal financial assistance, according to the US Department of Education. • Individual Education Plans, IEPs fall under a similar Act, the Individuals with Disabilities Act, IDEA which ensures children with disabilities related to special education needs have access to free appropriate public education.

13. 504 Plan, ADA & IDEA • Section 504: available in public and private schools receiving federal funding; “the major life activity substantially limited does not need to be related to learning” • ADA: same as 504, covers daycares and camps however does not cover religious affiliated schools/programs unless federally funded • IDEA: law covering special education services; must demonstrate that Diabetes adversely impacts ability to learn and progress academically

14. 504 Plans • Suggested Content to be included: • Recognition and prompt treatment of high and/or low blood sugars • Access to supplies/insulin • Unrestricted access to snacks, water and bathroom breaks • Adherence to care schedule (regular blood sugar checks, meals and snacks eaten on time) • Modifications to schoolwork/time frames for completion as needed or time to make up work missed • School excuses for Diabetes clinic visits (some families travel long distances for appointments) • Accommodations for special activities: school parties, field trips, etc

15. You know you're the parent of a child with diabetes when ... ☻You hear your teen say, "When I'm high I don't feel it" and your friends jaw hits the floor when you respond, "Some people don't feel it.“ ☻Your child holds up a box in the grocery store and, when you ask "How much?", the nice bystander says "$2.99" and your child says, "15 carbs for one serving.“ ☻You get an advertisement online saying that they have the perfect pump and you wonder, "Animas or Medtronic?", only to find out it is a shoe store advertisement. ☻You spend several minutes on Christmas Eve reassuring your child that if Mommy gets up for a 2 a.m. bg check while Santa is in the house he'll still leave presents. ☻You go to tell the person in front of you that their pump tubing is hanging out, only to realize that it's the headphone wire connected to their iPod.

16. ☻You drink too much coffee in the morning and when you say, "Wow, I have to go to the bathroom again!", your 5 year old looks at you and grins and says, "Mom, are you getting diabetes too?" ☻You're the only mother at playgroup chasing around your 3-year-old yelling, "If you don't come eat these jellybeans right now, I'll put you in time out!" ☻Your son gets a bloody nose and you reach for the glucose meter to check his blood sugar. ☻You find parts of syringes in your son's room and he is now using them as swords and granades for his action figures, after throwing away the needle part, of course! ☻Your 10-year-old daughter looks at a beautiful, pinkish-purple sunset and declares, "That is so pretty! It looks like an infected site!" -from www.childrenwithdiabetes.com ☻

17. Resources • American Diabetes Association: www.diabetes.org • Juvenile Diabetes Research Foundation: www.jdf.org • National Diabetes Education Program www.YourDiabetesInfo.org • www.childrenwithdiabetes.com • US Dept of Education: www.ed.gov

18. References • Kaufman, Francine Ratner, MD. Diabetes at School: What a Child’s Health Care Team Needs to Know about Federal Disability Law. Diabetes Spectrum January 2002, v. 15. no.1 63-64 • Guthrie, Diana W., PhD, CDE, et al. Psychosocial Issues for Children and Adolescents With Diabetes: Overview and Recommendations. Diabetes Spectrum, January 2003, v.16 no.1 7-12 • Protecting Students with Disabilities: Frequently asked Questions About 504 and the Education of Children with Disabilities. www.ed.gov March 17, 2011; retrieved on 11-2-11.