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A Parent’s Guide to Navigating OCD

Courtney Murphy, MD

GoalsAssist Families in Assembling Their Team to Fight OCD

● Utilize videos, slides, and a packet of information to accomplish this goal

● Discuss type of therapist needed for your team and how to find one

● Discuss importance of having a medical doctor on your team and how to choose one

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Goals continued

● Discuss getting your child’s school on your team

● Learn how to assemble a packet for your school

● Discuss insurance information

● Discuss taking care of yourself

Our Story

Courtney, Brian, Patrick, 15 (diagnosed with OCD at age 11)

and Madeline, 13 (officially diagnosed with OCD at age 6)

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Courtney’s and Madeline’s Videos

Every Child is Different.Every Struggle is Different.

I hope you can find a few pearls to help you navigate your own

family’s journey.

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EDUCATE YOURSELFwww.iocdf.org

www.beyondOCD.org

www.OCDkidsmovie.com

Assembling Your Team: Therapist/Psychologist

● Must find a psychologist or therapist trained in ERP (exposure and response prevention), a form of cognitive behavioral therapy

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Video of Dr. Sellers,Clinical Psychologist

● Educate yourself

● Read article included in my packet

● “Ineffective and Potentially Harmful Psychological Interventions for Obsessive-Compulsive Disorder”

Assembling Your Team: Therapist/Psychologist

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● Call your insurance company and ask for a list of therapists and psychologists

● Look at people listed on iocdf.org Resource Directory

● Ask your pediatrician if he/sheknows of a psychologist

Assembling Your Team: Therapist/Psychologist

Do they treat OCD in children?

Yes.Then ask, “How do they treat OCD?” No

STOP!Cognitive

Behavioral Therapy

(specifically ERP)

Any Answer besides CBT or ERP-STOP!

How is ERP implemented for OCD? What specific training for OCD does the therapist have?

Vague answer-continue to another person.

Reasonable Answer- Ask about scheduling an

appointment.Ask about insurance.

If no one in your area treats OCD, consider a specialized center.

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Assembling Your Team: Therapist/Psychologist

● It is better to wait and see the right person than to start down the wrong path

● Consider going to a Specialty Center for OCD

Specialized Centers for OCD

● Specialized Centers may offer:

● Individual ERP

● Intensive Outpatient Programs

● Residential Programs

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Assembling Your Team: Choosing Your Medical Doctor

It is important to have a physician on your team that can care for the physical health of your child and prescribe medications if needed.

Video of Dr. Katzenmeyer,Board Certified Pediatrician

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Assembling Your Team: MD

● Every child should have a pediatrician familiar with OCD on his or her team.

● Ideally, the pediatrician should have experience in treating OCD or willing to do research on the topic.

Pediatrician

Assembling Your Team: MD

● Ask if the pediatrician is comfortable prescribing SSRI medications like Prozac or Zoloft at dosages necessary for OCD.

● Ask if he/she has a network of psychologists and psychiatrists to which they refer patients.

● A benefit of pediatricians is that they are usually covered by insurance and are more easily accessible.

Pediatrician

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Assembling Your Team: MD

Take Away: Do your research and ask questions! Find a pediatrician with experience in treating patients with OCD and who is comfortable prescribing SSRI medications at dosages necessary for OCD.

Pediatrician

Assembling Your Team: MD

● Have had specific training on OCD and should be comfortable prescribing medications.

● May be important for children with complex medication management who don’t respond to high doses of SSRIs. Will prescribe antipsychotics.

Child Psychiatrist

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Assembling Your Team: MD

● Unfortunately, most have long wait times to get an appointment; some psychiatrists do not accept insurance payment.

● Take Away: Still do your research and ask questions! There are varying degrees of expertise regarding OCD with child psychiatrists.

Child Psychiatrist

Assembling Your Team at Your Child’s School

Start with the attitude that you want to work with your child’s school to assemble a team for your child.

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School Video featuringDeedra LaPlace, Principal

Lori Latuso, Teacherand Elizabeth Singletary,

School Counselor

Assembling Your Team: School

Know Your Child’s Rights

● IDEA -Individuals with Disabilities Education Act (leads to IEP- Individualized Education Plan)

● Section 504 of the Rehabilitation Act (leads to IAP- Individual Accommodation Plan)

● http://beyondocd.org/information-for-parents/helping-a-child-who-has-ocd/ocd-at-school; https://kids.iocdf.org/for-parents/talking-to-your-childs-school/ocd-idea-and-ieps-how-to-access-special-education-services-for-children-with-ocd/

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Meeting with the School Counselor or Psychologist

● School Counselors can be a great resource to help assemble your team at school.

● School Counselors:○ Provide a safe place for your child○ Work with your child’s psychologist or therapist to help

with school accommodations○ Help educate teachers about OCD○ Generally NOT trained to provide ERP

Meeting with the Principal/Teacher

● Set goals for meeting

● Put them in writing

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Sample Goals for Meeting with Principal

1. Discuss OCD in children

2. Present your child’s story (always start with the positive first)

Sample Goals for Meeting with Principal

3. Discuss recommendations made by psychologist, pediatrician, psychiatrist, and/or therapist

4. Have principal discuss how the school has accommodated children with OCD in the past

5. Discuss the resources available at the school

6. Discuss IEP or IAP

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Sample Goals for Meeting with Principal

7. Discuss next year’s teacher choices and classroom environment

8. Present and review your OCD packet

9. Plan for your next meeting

School Packet

● 1st page- Start with a letter about your child

● Don’t forget to include the POSITIVES!

● Sample letters in handout

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School Packet● 2nd page- Letter from Therapist

● Letter should include:○ Diagnosis ○ Impact of diagnosis on school performance ○ Type of therapy that child has received○ Ongoing treatment should be discussed○ Request for specific school accommodations

● Sample letter in packet

School Packet

● Third Page- Provide information on OCD

● Print out information from websites on OCD

○ https://iocdf.org/about-ocd

○ https://childmind.org/downloads/Teachers-Guide-to-

OCD-v1.pdf

○ http://anxietycanada.com/wp-

content/uploads/2019/02/ocdschools_0.pdf

● Put stars and notes by the items with which your child

struggles

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School Packet

● Provide a list of books that the school should consider purchasingo Students with OCD, A Handbook for

School Personnel

● Include a list of websiteso https://anxietyintheclassroom.orgo https://kids.iocdf.org/

Insurance Information● Obtain a list of “covered” therapists or psychologists by

calling your insurance company. ● Ask your insurance about mental health benefits.● Look on iocdf.org website’s Resource Directory.

https://iocdf.org/ocd-finding-help/find-help/● Begin calling providers and ask important questions.● For Intensive Outpatient or Residential Programs- Call

program directly.

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Insurance Information● If no one on your insurance meets criteria for

treating OCD, call and find out what benefits you have for out of network providers.

● Find a provider that treats OCD. ● Ask provider if they will accept an

individualized contract.● Write a letter to your insurance

company. Sample letter in packet

Insurance Information

● Letter to Insurance Company○ Include diagnosis, negative impacts○ Include references to articles that provide

evidence that ERP is most effective treatment○ Include diagnosis and treatment codes○ Ask for individual contract or

reimbursement of services

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Insurance Information

● Insurance Information Continued○ Have pediatrician or therapist send a letter as well.○ You will almost certainly get an initial rejection

from your letter. Appeal! ○ Insurance appeal boards are real people

so details about your child help.○ Insurance only covers evidence-based

treatments

Insurance Information

● For Intensive Outpatient Programs (IOP) or Residential Programs○ Call programs directly and ask for their insurance

coordinator. ○ Remember the geographically closest program

may not be the one on your insurance plan.

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Take Care of Yourself and Siblings!

● Acknowledge your own feelings and questions.○ Common feelings: guilt,

sadness, despair○ Common questions: Did I cause

this disorder? Is it my fault? What am I doing wrong as a parent?

Build Your Own Support Team● OCD support group (search IOCDF website for

support groups near you or join one online-suggestions in handout)

● Friends who agree to learn about OCD and support you

● Your own therapist● Pastoral Care

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Take Care of Yourself and Siblings!

● Consider if you have mental illness ○ Anxiety, depression, OCD

● 1st degree relatives of children with OCD have higher rates of OCD

● Get treatment for yourself ● Healthy parents are more able to

support their child in his or her battle with OCD.

Take Care of Yourself and Siblings!

● OCD is a family illness

● Remember siblings

● Watch Unstuck, an OCD Kids Movie

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Become an Advocate for

OCD