A Desperate Search
By Cathy Hickey, Project Coordinator, Family-to-Family Health Information
Finding a therapist who can diagnose and effectively treat behavioral health conditions is a challenge for many patients and families.
While effective treatments exist, many people with behavioral health conditions do not receive the help they need. Families report that finding a treatment provider who understands the issues, make a correct diagnosis, can build a working rapport with your child, create a treatment plan that the patient can follow, and also is acceptable to your insurance carrier can be a tall task indeed. My family has experienced this reality first hand. It started one morning in second grade, when my daughter couldn’t walk into the school, absolutely refused! I didn’t understand what was happening and she couldn’t tell me why. I forced it; she had to go to school! Then the “rages” started. The school said she needed to see her doctor, they wondered what’s happening at home? The primary care doctor said use behavior management at home, or maybe send her to a group home. She asked unusual questions: “Mom what is 4 times 4, what is 4 times 16, 4 times 64, 4 times 256?…I began my search and tried desperately to find a therapist, an answer, a referral to neurologist. Soon this became working with three therapists, a hospitalization and a cocktail of useless medications. All of that and we still had no diagnosis other than bad parenting, or maybe it could be ADHD, or maybe a mood disorder, or maybe childhood schizophrenia and even maybe your husband abused her. We still didn’t know what was wrong and neither did the professionals.
I stayed up nights surfing the internet looking for answers. Katie was tapping and touching everything 4 times. I suspected OCD but really didn’t understand it. And every “professional” said no this is not what OCD looks like. I came across a research study on treatment for OCD. More rages. I signed up immediately, went to the interview (had to bribe my daughter to go, she was tired of being labeled a bad kid).
After a three hour evaluation she was diagnosed with severe OCD. Katie did not want to go home, she wanted to start the treatment immediately. Someone understood her, she was not crazy. We spent the next 12 weeks in outpatient treatment, Katie’s affect was improving!! She was so successful in treatment that we could not continue counseling there.
I was scared, where would we go now? I begged for referrals only to learn they did not accept our insurance, or they had no openings…Finally found someone that could see her in two months. It was the best. She listened to us, respected us, spent time with us (sometimes up to 1 ½ hours!!). She asked us what we needed. We spent the next five years with her. Then she moved out of state. Where would we go now? Katie was 16 yrs. old. No one has openings for adolescents, and has experience treating OCD. Katie became depressed, angry, school refusal. We cycled through 3 different providers settling on one who didn’t treat OCD but was able to help Katie survive adolescence.
Meanwhile I was searching for an adult provider while I could still be involved…again no one was out there. I was trying to help Katie transition to adulthood, giving her the phone numbers and a script…She hated talking on the phone, leaving messages, hearing that they could not treat her. It was difficult to watch but what was I to do? Soon she would be 18 and I could not make these phone calls anymore. Thoughts in her head would not stop.
Exposure Response Therapy is known to be the most effective treatment for OCD. One Therapist stated that she knew how to treat OCD. After 4-5 weeks into therapy Katie asked her if she could help her with ERP. The therapist (sarcastically) told her that was an experiment she could try at home. Katie never went back to see her! So again we were in search of another provider.
We attend the International Obsessive Compulsive Disorder Foundation conference annually, it being a lifesaver for our whole family to be able to connect with others. This past summer we saw the name of a therapist in the program who resides near Katie’s college and is trained in ERP. Our attempts to stalk her and find her were unsuccessful. Katie called her a week later. Katie says Mom, she is so easy to talk to! But she has no openings and doesn’t take our insurance…She called me back and said she talked to the counseling center at my school, found me a therapist there that can treat me! She will help me set up a support group at school, she can help me meet others at my school with OCD…I can’t wait to go back to school! So here we are back on the right track, again. I am hopeful.
Tips for finding a mental health provider:
• Ask your health insurance company for a list of covered providers.
• Seek a referral or recommendation from your primary care provider.
• Ask trusted friends or family.
• Check to see whether your company’s employee assistance program (EAP) or student health center offers mental health services.
• Contact a local or national mental health organization, such as the National Alliance on Mental Illness (NAMI).
• Search websites for professional associations that have directories of mental health providers.
• Search the Internet under categories such as community service numbers, counselors, psychologists, psychiatrists or social service organizations.
When choosing a mental health provider, consider these issues:
• Education, training, licensing and years in practice
• Areas they specialize in and specific services they offer
• Treatment approaches and philosophy
• Which insurance providers they work with
• Office hours, fees and length of sessions
Don’t hesitate to ask lots of questions. Finding the right match is crucial to establishing a good relationship and getting the most out of your treatment.