BMPN Webinar Transcripts


Chat With Jean Galovich

November 12, 2009

The Balanced Mind Parent Network Live Event Transcript

Did you miss our chat with Jean Galovich? Read the transcript of this exciting and informative chat. The Balanced Mind Parent Network will be hosting several more expert chats this Winter. Watch your email for more details. 

Biography

Jean is President and Founder of HealthMax, Inc., a healthcare intermediary services firm located in Downers Grove, Illinois. She has worked in and consulted with the healthcare industry for over twenty years. In her role with HealthMax, Jean draws on her knowledge of both health benefits and the structure and function of the healthcare industry to help clients with managing health benefit claims and resolving problems with claims processing, incorrect bills and access to providers.


Nanci  
Jean would you like to start off by giving us some background information about the mental health parity law?

Jean Galovich
Thanks Nanci, and hello everyone. I am glad to participate in this chat today, as I am a member of The Balanced Mind Parent Network and have a seventh grader with a dual diagnosis of BP and ADHD. I also work with many families with one or more family members with serious mental illness.

As most of you can probably relate, this new law was necessary because most insurance plans have had more limited benefits for behavioral services than for other medical services--that is, limits on inpatient days or outpatient visits. The intent of this law is to eliminate those differences and promote parity in benefits. The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act was passed in October 2008 and was to take effect in October, 2009, but in the absence of federal regulations the law now becomes effective 1/1/10. The law applies to group plans with 51 or more employees, whether they are insured or self-funded. It also applies to Medicaid plans. In essence, the law mandates that if mental health benefits are provided they must be on a par with other medical benefits. That is, there can be no differing benefits on inpatient days or outpatient visits, or differences in coinsurance, copays or deductibles.

Jean Galovich
I'd be happy to take any specific questions anyone may have.

dmt
Are federal regulations planned or expected? And if so how will that affect the current Equity Act?

Jean Galovich
There has been formal communication between leaders in the House and Senate and HHS Secretary Kathleen Sebelius. The regulations are expected by January. They should address questions such as--can a plan have separate but equal deductibles for mental health services and other medical services. 
The regulations are intended to clarify areas where there are options for compliance. Clearly the intent of the law is to make mental health services and benefits more widely accessible.

Nanci
Is there a significant chance that there could be two separate deductibles?

Jean Galovich
That's hard to say. I've seen varying figures in the amount of expected increases in overall plan costs, but they range anywhere from a half percent to five percent. It's difficult to predict how specific the regulations will be. I think having separate deductibles would be a barrier to more people seeking treatment and using their benefits.

Carrie
I'm curious what 'other medical benefits' are
and if this would include or affect prescription drug benefits?

Jean Galovich
"Other medical benefits" are benefits provided for all other medical conditions besides mental illness. There is no provision in the law allowing for differences in prescription drug benefits for mental illness or medications for other medical conditions. Carrie I ask about 'other medical benefits' because they are often covered differently (primary care doc vs. specialist, occupational therapy vs. chiropractic). Which would mental health benefits fall under?

Jean Galovich
Again, a great question. Mental health services would be considered specialist and not primary care (although some get their meds from a primary care doctor, and there are varying opinions on that). In terms of the outpatient visits, a plan can comply in two ways--they can either not limit those services, or they can put a limit on outpatient visits that would apply to any outpatient services (physical therapy, occupational therapy, therapy, physician, etc.), such as a limit of 60 total visits a year.

Melissa
When you say the law becomes effective 1/1/10 does that mean insurance policies that begin at that time must follow the parity law?

Jean Galovich
Thanks for your question. Most plans follow a calendar year, so most plans must comply with the law 1/1/10. If a plan has a new plan year starting July 1, then the date for their plan is 7/1/10. Collectively bargained plans do not have to comply until their next collective bargaining agreement effective date.

I have a client with two family members with mental illness who got his insurance coverage through a PEO. The PEO actually changed their plan year to 10/1 instead of 12/1 so they would not have to comply with the law for another year (That was before the effective date was delayed to 1/1/10).

Nanci
It's disheartening to see the ways that companies will go to great lengths to avoid what they are legally obligated to provide!

smallmom
Our current health care plan covers no mental health residential treatment. Is this likely to be addressed in the regulations?

Jean Galovich
Unfortunately the Act is silent on benefits that are specific to mental health, namely residential treatment and partial hospitalization. It is unclear if the regulations will address this.

dmt
Does the parity of the current Equity Act apply to how pre-authorizations or continued services are determined as well? For example, will insurance companies get to continue with their very restrictive level of care guidelines and their control for pre-authorization or continued services for coverage of acute inpatient and partial hospitalization? I ask because my son was just denied continuation of his partial hospitalization even though the facility doc said it was needed, the insurance company doctors said he did not and the insurance company. Denied it based on their own doctor’s review. By the way my son met their level of care guidelines as far as the facility doc was concerned and from what I read of their guidelines he did as well.

Jean Galovich
The industry articles and employer surveys I have read predict there will be increased usage of Employee Assistance Programs, preauthorizations, case management and carve outs with mental health services coordinated by a specific vendor. I would have as persuasive a case as possible, with documentation ready.

karenmmc
Does this law apply regardless of what state you reside in?

Jean Galovich
Various states have their own mental health parity laws. The Federal Act basically serves as a floor of benefits that is expected. If a state does not have its own law then the Federal law serves as the guide. If a state has a more restrictive Act, then the Federal law is what should be followed in most cases.

dmt
Do you know where (web address) we can to go to read the actual Equity Act?

Jean Galovich
http://www.govtrack.us/congress/bill.xpd?bill=h110-1424

Mom to four
Do you know how or whether parity has been addressed with any of the new health care reform legislation?

Jean Galovich
I don't believe there are any major provisions in the bills specific to mental health services, but as the debate continues we may see some change in that.

Melissa
My husband works for a large insurance company. We just received the new benefit package to go into effect 1/1/10. They cut the outpatient mental health coverage from 100% in network and 80/20% out of network to 50% for both outpatient and inpatient. Both of my daughters and I have bipolar and ADHD. With the new coverage we can't afford to continue to receive the services we've been getting. What do we do if we think the company isn't complying with the law?

Jean Galovich
The first place I would start is with the human resources department and tell the benefits manager that your understanding of the Act is inconsistent with the new plan benefits. If their response suggests they are not complying with the law, then I would contact your state’s Department of Insurance. This information can usually be found on the web site that lists all departments in a particular state's government and can be found by googling the state and the department you're seeking. In some states it might be referred to as professional regulation.

I would also check the back of your Summary Plan Description and see if the plan is subject to a federal law called ERISA. If so, there should be instructions on how to contact the U.S. Department of Labor. You said the employer is a large company but again there needs to be 51 employees for the plan to be subject to the Act.

Carrie
How do you anticipate this law will impact the number of mental health providers who accept insurance?

Jean Galovich
Good question. I think there should not be a change in the number they accept, but there may be increased scrutiny with a new plan or new provider on exactly what is covered. As we all know, there are some insurance companies that are better at expeditious approvals and claims payment than others.

lvsmith
Would this law mean that an employer would be unable to have different insurance coverage for mental conditions? For example we have a PPO for our medical but we were placed on an HMO for mental health benefits.

Jean Galovich
The law requires that the benefits be equivalent for mental health and other medical services, and there cannot be a difference in benefits provided. There also cannot be differences in how benefits are paid in network for mental health and medical, or out of network for mental health and medical.

elkabong
If an insurance company cannot technically 'deny" coverage for mental health visits, would they still be able to cap you out in individual plans at a set number of visits, scaling them to the number of outpatient medical visits. To put it another way, would they simply scale down the number of outpatient medical visits in order to say they've hit parity? The real question being how does the government have oversight of finagling to get around the regulations?

Jean Galovich
Again, the scenario you describe here does not sound like it would comply with the new law.

Nanci
So, an insurer couldn't decide to limit the number of medical office visits in a year as a backhanded way of reducing (or avoidingincreasing) mental health coverage?

Jean Galovich It is possible that a plan can lower the benefits (e.g., number of visits) for all services to what they currently provide for mental health. It would be unwise for an employer to do that but it is possible. We will have to see what the regulations say. dmt If the insurance company does not require pre-authorization for seeing a specialist, as in most PPOs, then does the Equity Act deny the insurance company from having pre-authorizations to see a doc or clinician for mental health?

Jean Galovich
That is my understanding, but we will have to see what clarification the regulations provide.  As clarification, the Act, as further defined by the regulations, are enforced by federal agencies, the main one being the Department of Labor.

Nancy
My insurance is Blue Cross Blue Shield of Kansas. We live in Colorado. There appears to be a difference in the criteria required for a therapist in Kansas. For example: LCSW vs. a Master degreed therapist with a counseling certification from Colorado. How do I get them to pay?

Jean Galovich
You could try to appeal any decisions with the insurance company. If the therapist you are seeing is as effective and less expensive, you might have a case. There are differences in licensing between the states that play a role here.

Nanci
I have a question that isn't specific to parity, but does affect many of our members because of the shortage of mental health resources. If we need to obtain services from an out of network provider, can you recommend any strategies for negotiating with the insurance company to get them to make an out of network exception?

Jean Galovich
If a case can be made that there is no in-network provider that can provide the needed services, then that is an avenue to pursue. You can try contacting the customer service area to find out their procedure for doing that. Some insurance companies have a consumer affairs area that reports directly to the president that can help also.

Nanci 
We have just a few minutes left. Jean, are there any other pointers or information from your experience that would be helpful for our members to know about?

Jean Galovich
It is always best to negotiate up-front. While it's rare in mental health, any information on clinical outcomes for a specific provider would also be helpful if you can find it.

Nanci
Thank you so much for sharing your time and expertise with us, there are certainly a lot of unknowns, particularly with the delay in the regulations.

Jean Galovich
This is the time when a lot of companies are going to be modifying their benefits to comply with the law. I strongly urge you to contact the benefits manager for your plan so that they know the providers, benefits, and other things you may wish to share about your situation so that any changes they make will be favorable to you.

Nanci
Great point!

Jean Galovich
Thanks everyone, this has been a great discussion. I wish all your families the best in this period of new opportunities and transition

Nanci
Thank you again for joining us, Jean. You gave us a lot of great information. If people are interested in your consulting or advocacy services, how should they contact you?

Jean Galovich
They can contact me at Healthmaxinc@aol.com or by phone at (630) 910-6964.


Chat with Mary Fristad, Ph.D

September 17, 2009

Did you miss our chat with Mary Fristad, Ph.D? Read the transcript of this exciting and informative chat. The Balanced Mind Parent Network will be hosting several more expert chats this Fall. Watch your email for more details.

Biography

Dr. Fristad is a Professor of Psychiatry and Psychology at the Ohio State University, where she has been on faculty since 1986. Dr. Fristad is the Director of Research and Psychological Services in the OSU Division of Child and Adolescent Psychiatry. Dr. Fristad’s area of specialty is childhood mood disorders. She is has published over 100 articles and book chapters addressing the assessment and treatment of childhood-onset depression, suicidality and bipolar disorder (manic-depression). 

 Dr. Fristad recently edited the Handbook of Serious Emotional Disturbance in Children and Adolescents. She has also written a book for families entitled Raising a Moody Child: How to Cope with Depression and Bipolar Disorder. Dr. Fristad has been the principal or co-principal investigator on over a dozen federal, state and local grants. Recently, she been awarded a 5-year NIMH grant to investigate the efficacy of Multi-Family Psychoeducation Groups in treating childhood mood disorders and a 2-year grant from the Ohio Department of Mental Health to investigate the efficacy of Individual Family Psychoeducation in treating early-onset bipolar disorder. Dr. Fristad is a member of The Balanced Mind Parent Network's Professional Advisory Council.


 Mary Fristad PhD     

Hello everyone!

Nanci - The Balanced Mind Parent Network     
Welcome, and we'll start in just a few minutes. During this chat session you can submit questions at any time. They will be held in a queue and put through one at a time for Dr. Fristad to respond.

Mary Fristad PhD     
One update while I'm waiting for a question— our treatment manual (written for therapists) should be available next year with Guilford Press and we will publish accompanying workbooks for multi-family psycho educational psychotherapy (MF-PEP) and individual family PEP (IF-PEP) for families to use in treatment.

Nanci - The Balanced Mind Parent Network     
Excellent, thank you for that update.

Nanci - The Balanced Mind Parent Network     
Dr. Fristad, thank you for being here, would you like to make any opening remarks?

Mary Fristad PhD     
Hello, everyone! I am glad that we know more about how to support families of children with BPD than we did 5 or 10 years ago!

sherrie     
My son is adopted from Russia. He has fetal alcohol and bipolar. He is a hard to treat bipolar. Can the bipolar be caused by organic brain damage from alcohol?

Mary Fristad PhD     
Children and adults can have "Mood disorder due to a 'general medication condition'"— this can include fetal alcohol syndrome. This does complicate treatment.

sherrie     
Any suggestions?

Mary Fristad PhD     
How old is your son?

sherrie     
9

Mary Fristad PhD     
It is important for him to recognize his symptoms and to really accept the concept that his symptoms do not define him but rather, he needs to understand them in order to control them.

CTD     
Can you comment on any experience about kids diagnosed at an early age (5-ish) and the likelihood that they go on to develop adolescent or adult BP? Furthermore, is that likelihood affected by whether or not they start meds, in your opinion?

Mary Fristad PhD     
If you mean diagnosed at age 5 with bipolar disorder (and the diagnosis is accurate), my best clinical guess is that they will continue to have bipolar disorder. The critical issue is to manage the symptoms as comprehensively as possible so the child passes through critical developmental phases as healthy as possible.

Nanci - The Balanced Mind Parent Network     
We have a related questions about whether the prognosis is better if a child is diagnosed and started on treatment at an early age.

Mary Fristad PhD     
It’s better to effectively (and accurately) diagnose and treat than not.

CTD     
How do you judge is a diagnosis is "accurate" really?

Mary Fristad PhD     
It is so very important for parents to become educated about their children's conditions— this is part of why I am such a big fan of The Balanced Mind Parent Network! You need to understand why the provider made the diagnosis he/she made and continue to observe your child (and your child, as well) to see how symptoms manifest over time and respond to treatment. Treatment response does NOT dictate diagnosis, though.

Leah     
What do you think of natural supplements such as EmpowerPlus with choline and inositol either alone or in combination with psych meds?

Mary Fristad PhD     
We just recently published a case study in the Journal of Child Adolescent Psychopharmocology on EmpowerPlus ("EMP+"). We also completed an open label N=10 of EMP+ in children with "severe mood dysregulation". The results were positive; we have not yet submitted that paper for publication.

karshan     
What parenting methods do you recommend for my 10 yr. old child who is verbally abusive to his family members, including cursing and some aggression. Should we expect him to be able to control these behaviors?

Mary Fristad PhD     
That is a complicated question. When a child is "too high" or "too low" they do not respond well to feedback. It is important to have problem solving discussions about behavior at a time when all are calm. However, my bottom line is physical harm to self or others is never tolerated.

Leah     
Regarding physical harm to self and others, how exactly do you not tolerate it? Restraint? Consequences? Other ideas?

Mary Fristad PhD     
Depending on how dangerous the situation is—restraint (this is not always feasible— if it doesn't feel safe, don't do it), consequences, calling the police. Regarding the latter, it is very helpful to have a preemptive discussion with your local precinct worker— so they know how they can most effectively intervene, if needed.

Nanci - The Balanced Mind Parent Network     
Yes, many police departments use Crisis Intervention Training and asking for a CIT trained officer can help.

Mary Fristad PhD     
That is a fabulous program.

Janice     
Why are some doctors so hesitant to diagnose young children with bipolar disorder and treat them?

Mary Fristad PhD     
Many clinicians were not trained to diagnose BPD. The research really only started in the 1980s, picked up in the 1990s, and really took off in the 2000s. Thus, many clinicians are not well versed in diagnosis or treatment. Additionally, we do not have long-term follow-up data on medications for growing brains, so there is some legitimate hesitancy.

Janice
Can you talk about the role of psychotherapy (counseling) in addition to medicating a young child with BP? And what strategies should a therapist use?

Mary Fristad PhD     
Therapy is critical for the child and parents. I recommend any form of psychoeducational psychotherapy (PEP) — for young children, our PEP program or the RAINBOW program.

Patty     
My son is 16, diagnosed at 11. When I ask what he feels (sad, frustrated, trapped), he just says fine. He knows he has bipolar disorder, but doesn't really SEE his illness. If we correct him, he thinks we are wrong because he didn't do anything. How do you get kids to SEE their illness?

Mary Fristad PhD     
My favorite starting exercise in therapy is the Symptom-Self (or "Naming the Enemy") exercise. We talk about it in Raising a Moody Child. For a 16 year old, it is probably better to have a therapist help mediate this discussion. The key is for your son to recognize his symptoms asexternal to his core personality, then you and he can team up to manage the symptoms. 

He may also either be resorting to "fine" because he doesn't want to get into a discussion with you OR he really isn't very aware of a broad array of emotional experiences he is having.

Cindy     
I have a 14 year old who is stable on medications, but we still struggle with end of the day exhaustion and homework battles. I think he still needs a lot of support with his homework because I think not doing well academically would cause too much stress. My husband thinks he should be working independently on his homework and suffer the consequences if he doesn't complete it. It's a tough situation because in so many ways he's stable. Can you please talk some about symptoms that may remain even after stability is achieved and how best to support a teenager while still encouraging independence?

Mary Fristad PhD     
Absolutely, and this is such a common problem. Does he have an IEP? If so you might want to consider a reduced homework load, or a supported study hall to help with the work load at school.

Bernie     
My child is currently in a therapeutic home. She has basically given up her family and her amenities. She has gone to the extreme of getting a tattoo, piercings, and has colored her hair purple, pink and blonde. She is only 14. She has stated that she does not want my authority. Is this part of bipolar and or part of being a teenager?

Mary Fristad PhD     
It’s hard to say without knowing more about your daughter and your family situation. Tattoos, piercings and hair dying are not diagnostic of any disorder, but can be a defiant stance against parents or a rebellious statement. It may fit in quite well in her current setting/peer group?

karshan     
My 13 child has horrible anxiety about school. I never know which day he will wake up and refuse to go. Homework is also a major issue and that is when most of our explosions occur. What do you recommend?

Mary Fristad PhD     
It will be really important to work together with your therapist and school to develop a plan, hopefully in the context of an IEP, to manage emotional distress in the school setting. The IEP should also address the amount of homework coming home— a COMMON concern!

JB     
Is there any current or ongoing research on the effects of omega 3s on early-onset BP? Do you have an opinion about using something like OmegaBrite in lieu of or in addition to medication?

Mary Fristad PhD     
Interesting question. We have two omega 3 protocols under review Oct 5th at NIMH! Cross your fingers! I am extremely interested in conducting additional research. Two studies have been done: one in depressed children (double blind), one open label in children with bipolar disorder. Both are promising.

My clinical recommendations based on our limited info are to take 1-2 grams of EPA+DHA daily (NOT just the total grams of FISH OIL— it needs to be EPA + DHA— and preferably in about a 2:1 ratio— although we really don't have a lot of evidence for the best dose or ratio.

Nanci - The Balanced Mind Parent Network     
Are you familiar with Lovaza, the prescription version of an Omega 3 supplement? And if so, any feelings on whether Rx quality is better than OTC or not?

Mary Fristad PhD     
Sorry, no— but make sure that there is a USP label on the bottle. GNC has a triple strength capsule so you only have to swallow 1-2 per day.

cello     
I know discipline is essential, yet how does one meet the challenge? The mood takes a dive (therefore, increased aggression) when "justice" is served (a privilege is removed when the responsibility is not fulfilled). Things get much, much worse!

Mary Fristad PhD     
When your child is calm and able to problem-solve, work really hard on what he/she can do when the mood dives OTHER than resorting to increased aggression. I know, sounds easier than it is to do!

jodi     
What is the best way to handle an outburst directed at me? I've been told to leave the situation, but that seems to make it worse. She feels very abandoned and I think is scared...but when I stay she continues to lash out verbally at me.

Mary Fristad PhD     
I may start to sound like a broken record ...but when your daughter is calm, ask her what her experience is like and ask her what you can do to help her regain calmness. Some kids are soothed by your presence, others calm faster in your absence. The key is that SHE is part of the solution— she needs to take some ownership in success.

pam     
My 9 year old son is bipolar. With medication, he is successful at school. However, after school, he can't seem to hold it together to do his homework. Any suggestions for finding respite care, someone to stay with him while I'm driving his siblings around after school?

Mary Fristad PhD     
Such a common theme— those awful after-school hours! If you live near a college, I would try advertising for a student in special education, social work, psychology, etc., who could provide "specialized" childcare for you. This has been an absolute life-saver for families I've worked with.

Editor’ s note: There is a National Respite Locator link listed in the resources section of our website.

Janice     
Should discipline remain consistent for the same misbehaviors when a child is unstable, compared to how you would discipline them if they were stable? I tend to be more lenient with my son when I know he is unstable, thinking he cannot help it, but is that the right thing to do?

Mary Fristad PhD     
Yes, flexibility is key, but it is also important to have some "rules" about it— so that he (or his sibs) don't think that you are willy-nilly applying rules. One concept to keep in mind is to process AFTER an event (I like to think of it as a "TIME-IN" that follows "TIME-OUT").

mom2one Jackie     
At what point do you feel ECT (electroconvulsive therapy) is a viable option?

Mary Fristad PhD     
When you have had multiple failed medication trials and symptoms are severe.

Nanci - The Balanced Mind Parent Network     
Can you comment on the effectiveness of ECT in severe cases of BP?

Mary Fristad PhD     
For kids, there is almost no literature. Anecdotally, I support its use.

amarte522     
What is electroconvulsive therapy? What does that consist of?

Mary Fristad PhD     
ECT is what people often refer to as "shock therapy"—a small "shock" is sent unilaterally into the brain— and it often has an impressive ability to ameliorate treatment-resistant depression.

pam     
My son is at a private school that doesn't know he is bipolar. We are trying to keep his condition under wraps because we live in a small conservative town and I fear that parents may not allow their kids to play with my son if they knew of his condition. Am I doing him a disservice by not sending him to public school where they have IEPs  and other special help? He has a really tight group of friends at his current school, so I’m not sure change would be good.

Mary Fristad PhD     
If it isn't broken, don't fix it. If I am understanding your situation, he is doing relatively well as is?

CTD     
Are there any success stories of raising a BP child WITHOUT meds? Nutritional and behavioral approaches? I am frustrated at the speed at which I'm told to medicate, and do not have the sense that 'no stone has been left unturned' in the area of treating very young (<10 year olds).

Mary Fristad PhD     
You can probably hear anecdotal stories of anything. I have to say, the case study I mentioned earlier is quite impressive. A child I had treated conventionally for 6+ years, bipolar with psychotic features, OCD and accompanying diagnoses, never was 100% well on psychotropics and therapy. He switched to EMP+ and is the healthiest and most symptom-free he's ever been, and it is going on 2 years of recovery for him. We really need a double-blind placebo controlled study. We are resubmitting that this fall to NIMH.

mom2one Jackie     
Would you recommend trialing EMP+ before resorting to ECT?

Mary Fristad PhD     
It depends. EMP+ is a bit tricky for a child currently on meds— for our study, to keep things clean, we required a 3-week "washout" of all medications. EMP+ appears to potentiate other meds. If your child is so ill that ECT is being considered, I would probably do that, then consider EMP+.

CTD     
How about trying EMPower+ before any other meds are tried? All the case studies I've seen deal with patients already on meds.

Mary Fristad PhD     
CTD: that is the best way to trial EMP+.

karshan     
We live in a small town where psychiatric resources are lacking. My child has tried several med combinations and doctors are not sure what he has BP, Intermittent Explosive Disorder or ADHD. Can you recommend anywhere in the US for a thorough workup (diagnosis and medication)?

Mary Fristad PhD     
The Balanced Mind Parent Network has a Find-a-Doctor service, I would use that.

Nanci - The Balanced Mind Parent Network     
Also, there is a consultation program offered by Dr. Birmaher and Dr. Axelson through the University of Pittsburgh Medical Center. It's listed in our State Resources section under Medical for each state.

mom2one Jackie     
Is ECT also effective with mania and/or severe mixed moods?

Mary Fristad PhD     
Not in literature with kids but it has been used with adults.

Nanci - The Balanced Mind Parent Network     
Dr. Fristad, I have a question from a member who couldn't be here for chat. She wanted to know if you have any suggestions for how to curb the sugar/carb cravings with a teen girl with BP, particularly during PMS.

Mary Fristad PhD 
Ouch. That is really hard. Have lots of healthy choices around (e.g., frozen strawberries, raw celery with low-fat dip) and lots of physical exercise followed by drinking PLAIN WATER, and sufficient sleep. Lack of sleep leads to additional sensation of hunger.

teddyone     
Is there a point where you could consider lowering meds after you've seen stabilization for 2 years on the same 2 meds (Trileptal and Seroquel XR)? My child is 13 and is stable because of taking the meds.

Mary Fristad PhD     
We recommend a slow taper during a steady relatively stress-free time (e.g., summer).

Nanci - The Balanced Mind Parent Network     
Any thoughts on whether one should wait until the child is through puberty?

Mary Fristad PhD     
That is a question with a multi-part answer! Puberty can cause interesting responses in kids— but for someone stable, especially if experiencing side-effects, and if the child, parents and prescriber have a good relationship and know how to bump back up to the previous dose, if needed, there is an argument to be made for the smallest effective dose to be used.

Nanci - The Balanced Mind Parent Network     
We're getting near the end of our hour, and before I put through any more questions I'd like to see if you have any key points you'd like to share or emphasize to our families here?

Mary Fristad PhD     
Make sure you and your child understand the diagnosis and what you can do to work together to manage symptoms. It is critical that the child does not see the diagnosis as defining who they are as a person, rather, the symptoms need to be effectively managed. This puts the child and parent on the same team and they can talk together about the frustrations (and successes!) of doing so.

Lisa J     
My 12 year old son has an extremely hard time understanding that his 10 year old brother with bipolar disorder has a different set of "rules" than he does. We try not to make things this way, but there are times when you simply have to pick your battles. Other than spending special time with our 12 year old and trying to explain things to him (maybe we aren't saying the right things?)  how can we get him to understand the situation and rationalize the difference between the two of them?

Mary Fristad PhD     
Several ideas here—  
1) who said life was "fair"? (Is it fair that the 12 year old doesn't have to struggle with BPD? Is it fair that he has tougher rules? no and no!) 
2) your son may benefit from attending a sibling session with your 10 year olds therapist; 
3) it is important your 12 year old continues to lead his life as "normally" as possible—  sounds like you are trying hard to make that happen.

Nanci - The Balanced Mind Parent Network     
http://www.siblingsupport.org/ is a great resource for siblings.

sunwillshine     
I'm at my wit's end. We've tried so many different medications and nothing seems to be helping my daughter. At what point does it make sense to try and get my daughter into a research study? Is there any reason to hold back from this?

Mary Fristad PhD     
No reason whatsoever!

Nanci - The Balanced Mind Parent Network     
I think it's clear from today’s questions that parenting a child with a chronic illness raises more questions than answers. And we are grateful that you shared your time and expertise with us today. Thank you so much for being here, and for the tremendous work you do on behalf of our kids.

Mary Fristad PhD     
You are welcome!


Chat with Leslie E. Packer

August 13, 2009

The Balanced Mind Parent Network Live Event Transcript

Did you miss our chat with Leslie E. Packer? Read the transcript of this exciting and informative chat. The Balanced Mind Parent Network will be hosting several more expert chats this Summer. Watch your email for more details. 

Biography

Leslie E. Packer, Ph.D., is a New York State licensed psychologist in private practice, specializing in children and adolescents with neurological disorders such as Mood Disorders, Attention Deficit Hyperactivity Disorder, Tourette Syndrome, Obsessive-Compulsive Disorder, and Asperger's Disorder. In addition to her treatment services, she also serves as a consulting psychologist to school districts to provide staff developments and to assist school teams in developing appropriate educational programs, behavior plans, and accommodations for students with neurological disorders.

She is the author of two web sites, School Behavior and Tourette Syndrome "Plus", for parents, educators, and clinicians. Her new book, Find a Way or Make a Way, provides helpful school accommodations for a variety of disorders.


 

Nanci - The Balanced Mind Parent Network  
Please join me in welcoming today’s guest, Leslie Packer, Ph.D., to our monthly expert chat session.

Leslie Packer PhD    
Hi, everyone! I’m delighted to be here. Thanks to The Balanced Mind Parent Network for inviting me, and Nanci for all she’s done to get this chat organized.   
  
Nanci - The Balanced Mind Parent Network  
You’re very welcome - we have our first question so let's jump right in.

Carolyn    
My daughter is starting high school this year. I'd like advice about how much information to give to her teachers about her BP.

Leslie Packer PhD    
That's a great question. At the beginning, I would give them only enough to get them off on a good footing. That means: don't throw diagnoses at them and a list of problems, but focus on one or two things that they need to know immediately. I've learned that teachers want practical tips. So what can you tell them about how to get off on a positive note with your child?

And you can let them know that you'd like to talk to them in about two weeks after they've had a chance to start to get to know your child. That's when you can fill in more details.    

Carolyn    
Would you recommend an email or a request for a face to face meeting? Or some other format?

Leslie Packer PhD    
I tell the parents of my patients to send a letter to the teachers now that they will get when they come in to set up their classrooms. Keep the letter short (1-2 pages at most), focus on the immediate stuff, and be sure to tell them about your child's strengths and interests that they can use to form a bond with your child. They'll have more time to process it if it is before school starts.    

Carolyn 
Ok, thank you. I had no idea where to start. Middle school was much easier!

shaeNY    
My daughter is showing a lot of anxiety about the start of the school year. What can I do to help her get off on a positive note?

Leslie Packer PhD    
Wow, that's another great question! For one thing, you can remind her that all kids are a bit anxious. Everyone worries about whether they'll make a friend, whether their teacher will like them, whether they'll get lost trying to find their classrooms, etc. Some kids need a walking tour of the school before the year begins so they can map out how to get from class to class, what stairs to use, etc. Others need a "cheat sheet," like teaching them that classrooms that begin with 1 are on the first floor, and classrooms that begin with 2 are on the second floor. One of my kids went all of the way through high school without ever realizing that there is actually a scheme to room numbers.

You can also reassure your child that most kids do not make friends on the first day, and that you will consider the first day a success if she can come home and tell you the names of two teachers! Helping your child set realistic expectations for the first day of school may help reduce anxiety.    

ladybug    
My son is starting high school this year and recently diagnosed BP. He just came off an IEP for dyslexia. Not sure he wants to be put on another IEP. His concern is that will make him graduate with the minimum requirements which will affect his college entrance. Is this true and what do you recommend?

Leslie Packer PhD    
An IEP is not supposed to lower standards for graduation. It is intended to help students with special needs achieve the higher, usual standards. Colleges do NOT know whether students had an IEP or not. It is not supposed to be on their high school transcript. So keep the expectations high and if he needs the services to help him succeed in high school to increase his chances of getting into college, explain to him how an IEP can help him build towards his future.    

ladybug    
Sounds good. Thanks.

Leslie Packer PhD    
You're welcome.  
   
bella    
Prior to being diagnosed bipolar last year, my 13 yr old son was kicked out of the only middle school in our community. We now have a 504 in place for next year, but his placement is being changed to a different teacher/hall and he already is expressing anxiety about returning. This is the first year in his life that he is NOT looking forward to going back to school. Any suggestions as to how to make this transition any easier?

Leslie Packer PhD    
One thing that helps some students (and of course, I don't really know your son) is to contact the school's psychologist in advance and ask about arranging a private tour/meeting/walk around in the building. If a student can meet teachers in advance, that may also help reduce anxiety. I've had a few patients where we arranged for the student to go in during August and help the teacher set up the classroom. That way, the child felt more comfortable in the room and with the teacher.   
  
jdcmom    
my daughter is 9 - ADHD/BP. She functions well at school for the most part, but has some behavior issue- academically she's done well. Should I consider an IEP or other intervention to protect her in spite of good grades?

Leslie Packer PhD    
There are many intellectually gifted children and teens who need accommodation programs or IEPs. If a child is doing well academically and doesn't require special education services such as related services, then they may not need an IEP, but they may need an accommodation plan, also known as a 504 Plan.

If her behavior is likely to get her into disciplinary problems, then does she need a behavior intervention plan? If so, then you may want to contact the district about that. They will usually recommend a more informal approach first, but as a parent, you want to create a written record alerting them so that if her symptoms get her in trouble, you can protect her somewhat.

ladybug    
Do you feel a child with BP would do better in a private setting? Are there schools that specialize in BP?

Leslie Packer PhD    
I tend to be a strong proponent of public education for a few reasons: (1) the public schools have more funding and more resources, (2) the public district has legal responsibilities and mandates that private schools don't have, and (3) I wanted my own kids to be exposed to their peers in the community that they would see on the street, etc.

I do not know of any schools that specialize in BP, but perhaps the Balanced Mind Parent Network's resources could be of help to you on that.  
   
ShaeNY  
Our kids have been on the typical “stay up late, sleep late” summer schedule. When should we start switching them over to a “school” sleep and wake time?  I hate to spoil the last few days of their summer.

Leslie Packer PhD    
Spoil it. :) 
If your child suffers from the "Don't Even THINK About Waking Me Up in the Morning Syndrome," you need to start easing them back into the wake-up time that they'll need for school. Depending on how late they're sleeping, you may need to start now, by waking them up 15 minutes earlier tomorrow, another 15 minutes earlier the next day, etc. 
Don't count on switching them over two days before school re-opens. Their bodies and sleep cycles really need time to adjust. One thing that may help now is that when you do get them (or preferably, if they wake up to an alarm clock that is set), be sure to have something planned for them to do so that they don't go back to bed.   

Nanci - The Balanced Mind Parent Network   
I have a child that falls into this category. What do you recommend in the way of incentives, vs. just saying “this is the way it is, we expect this of you”?

Leslie Packer PhD    
That's a great question. It's easy to give book-based answers, but having lived with one of these kids myself, I think the house could have burnt down and no incentive in the world would have made a difference.

Nanci - The Balanced Mind Parent Network  
Oh, our kids must be twins separated at birth!

Leslie Packer PhD    
When I dealt with my own kid, we really focused on the self-management and responsibility issue, but if the child is younger, you can try some "cooperation rewards" that include getting up when asked to. Twins? LOL!

Leslie Packer PhD    
While there's a lull let me toss one thing out.... If your child gets their medication adjusted for school, remember to consult with the physician about when to start the change-over.    

Nanci - The Balanced Mind Parent Network  
Not to belabor this issue but it does speak to a more general challenge. To what degree do we allow natural consequences to guide our kids (detention or poor grades for being late or missing school) and to what degree do we interfere or “helicopter” to prevent those consequences? Particularly at the middle or high school age?

Leslie Packer PhD    
My friend and colleague, Sheryl Pruitt, had a great quote on that; "Prepare the child for the path, not the path for the child." It's understandable—and necessary—that we have to advocate for our children and prepare the way a bit, but we also do need to let them fall on their face sometimes so that they learn how to pick themselves back up and try again.

So I might not let my kid oversleep so much that they miss school, but by the same token, if they oversleep and miss some place that they wanted to go, I might let that happen and then use that situation to problem-solve with them about what they could do in the future to prevent that from happening again.

I also encouraged my children to advocate for themselves by working with them on how they could explain things to their teachers and peers without using their conditions as an excuse. Sometimes, though, I would still have to step in and educate the school or advocate more strongly for my children because even bright, articulate children will be unable to handle some of what school personnel may throw at them.   
  
JohnT    
My 12 year old son suffers from school refusal. He wants to go to school right up to the point we arrive in the parking lot, then simply cannot go in. Any suggestions to help him get past this point?

Leslie Packer PhD    
School refusal is a really tough challenge, but the key to coming up with a good intervention plan is back in the assessment stage, i.e., "Why is the child refusing to go to school?" We've learned that there are a number of causes. Some kids are highly anxious, while other kids may be refusing to go to school or have school phobia due to a medication side effect.

Yet other kids who have ADHD+ may refuse to go to school or be truant because school isn't a reinforcing place and they'd rather seek excitement elsewhere. If it seems like the school refusal is anxiety-driven, the school psychologist can help develop a behavior plan to ease his entry to school. It may involve a "check-in" ritual whereby he's asked to come see her or someone in the office. A plan might involve having him help a teacher before school doing something he enjoys. One thing that helps some anxious refusers is to have a non-parent take the child to school so that the separation issues are minimized.    

bella    
Can you elaborate on your comment from the previous question? How do we explain to their teachers and peers without using their condition as an excuse.

Leslie Packer PhD    
Great question! Some kids that I've treated or represented (or even parented) over the years seem to get to the position or view of "I can't help this .... I have (insert diagnosis here)." I worry that we're teaching kids to feel helpless about their conditions.

So, let me give you an example of the difference: 
If a child has a compulsion to turn a light switch on and off exactly 21 times when they enter the classroom, that is a symptom, yes, but it impinges on others, who even if they are educated about OCD, may be annoyed or frustrated. So the child can explain to peers, "I'm sorry about that... it's a compulsion, and I'm working on it. I realize it's frustrating for you and it's frustrating for me, too, but I'm trying to make it better."

If a child "loses their cool" and is really abrasive to peers, "explaining" "I have bipolar disorder" is only going to count for so much. After a while, peers generally get to the point of "I don't care what your problem is, don't take it out on me!" So we teach kids to recognize the impact of their symptoms on others and to take some responsibility for trying to protect others from their symptoms.

Does that answer your question?    

bella    
Yes, thank you.

Nanci - The Balanced Mind Parent Network    
I'm going to backtrack again to put through a question about something you said earlier about the timing of medication changes.

jdcmom    
Our pdoc just changed my child’s meds and school starts in a week. Could you elaborate?

Leslie Packer PhD    
Some medications are quick-acting, while others have to build up in the system over days, weeks, months. And of course, if you just changed meds, there's always that "wait and see" period in terms of side-effects.  It's important—for your child's safety and image—that someone in the school building know what they are taking and that they are undergoing a medication change—particularly since some medications can have behavioral side effects that might be misinterpreted by school personnel.

I often ask the prescribing physician to send a note to the school nurse (with written consent, of course) to let the school know what medications the child is on, any known side effects for that child, and under what conditions the physician wants the school to contact him or her.

One of the biggest shocks I ever got as a parent was when I learned that many schools do NOT have a current PDR for their school nurse. So if your child is taking a new or new-ish medication, you may want to think about sending in some information for the school nurse about the medication. Ask the pharmacy for the package insert, even.    

Nanci - The Balanced Mind Parent Network  
And, some schools don't even have a nurse on staff, so the medications are being handled by the school secretaries.

Leslie Packer PhD    
Ugh. Sadly, that's all too common.

ciao_bella    
Do you have any creative suggestions for educating a high school student with bipolar? It seems no matter what, the student with BP is easily overwhelmed and frustrated. Any thoughts beyond the normal, frequently recommended accommodations? For example: independent study in combination with reduced class load, and maybe even a class at a community college, etc. I'm constantly trying to think outside the box for ways he can be successful. I'm open to anything!

Leslie Packer PhD    
One of the things I do in educational planning for children and teens includes asking THEM what they think will work for them. I often use a "magic wand" question like, "If I had a magic wand and could make one thing better for you in school, what would it be?"

There's no one strategy that will work for all high school students with bipolar. I'm not even sure what you mean by "normal accommodations," because I would bet that most kids with BP are not getting all of the accommodations they really need. If a student is getting easily overwhelmed and frustrated, that suggests to me that they are NOT getting the right accommodations or enough of them.   
  
joanfisher    
Many families seem to have trouble getting their schools to listen to them, or to their doctors, or even to residential treatment center transition plans. How can you communicate with the home school that services are needed if they just say, "we can't do that because we don't have the money."

Leslie Packer PhD    
If you are in the U.S., my understanding is that it is flatly illegal for them to use that as a reason not to provide needed services. That said, they are probably telling the truth—that they need to watch the budget. One of the strategies I have used over the years is to have the M.D. on the case write a letter of "medical necessity." We have trained physicians not to write "It would be helpful," but to write, "It is medically necessary." Some schools still will try to ignore a physician's letter, but it makes it harder for them. And of course, parents always have due process rights, which includes the right to written notice for any service or request they are denying.    

Carolyn    
My daughter has always been a target of bullies. The usual suggestions about how to cope don't help/work for her. Do you have any ideas?

Leslie Packer PhD    
She shouldn't have to cope with bullying. The school needs to meet their responsibility to provide a safe environment for all students. Sometimes bullying can be reduced by peer education, but if there is a climate of bullying, then the approach needs to be building-wide. Has the school implemented an anti-bullying program?

One of the things I do is to document the problem and send it up the chain. Creating a written record of the problems may cause some administrator to realize that they could be in legal jeopardy of a lawsuit if they do not address the problem, but the bottom line for me is that it is the adults' responsibility—not your child's—to deal with the bullying. 
Carolyn    
Oh yes, and they have been receptive to my input. Often the bullying is very sneaky or she doesn't want to say anything because of fear of repercussions.

Nanci - The Balanced Mind Parent Network   
I think that's pretty common, so many of our families say that their kids are afraid to speak up or ask for interventions because they don't want to be viewed as a tattletale.

Leslie Packer PhD    
That's not specific to BP, either, Nanci. 

Nanci - The Balanced Mind Parent Network

Good point.

Nanci - The Balanced Mind Parent Network
We have just a few minutes left, Dr. Packer are there any points you would like to share with our members that haven't been addressed in the questions so far?

Leslie Packer PhD    
Lets see.... OK, tip from Life's Little Lessons:

Leslie Packer PhD    
All those new clothes we love to buy our kids for the new school year? Forget it. On the first day of school, let your child go to school in older clothes that are comfortable and soft or well-worn. Unless they want to go in new clothes, of course!

Structure, routine, structure. Rinse. Repeat. If we keep lowering the bar or moving it, our children tend to do worse. Keep the bar and expectations high and help them get there.

I hope your children all have a great school year. :)  
   
Nanci - The Balanced Mind Parent Network
Thank you so much for sharing your time and expertise with all of us this afternoon/evening (depending on your time zone). Just a reminder that you can submit general questions to Dr. Packer through her website  and watch for her book coming out shortly.

Leslie Packer PhD    
Thanks, everyone, and good luck.   


Chat with Matt Cohen, J.D.

May 14, 2009

Did you miss our chat with Matt Cohen? Read the transcript of this exciting and informative chat.

To stay informed about monthly Expert Chats and other The Balanced Mind Parent Network events, join our mailing list by entering your email address and zip code in the box in the top right corner of the website.

Biography

Attorney Matt Cohen is co-founder of the law firm Monahan and Cohen and is well known for his work in special education law. He has extensive experience in health care and mental health law and recently authored the book “A Guide to Special Education Advocacy - What Parents, Clinicians and Advocates Need to Know”.

Attorney Cohen can be reached via email at mdcspedlaw@earthlink.net.


Nanci - The Balanced Mind Parent Network     
We are very pleased to welcome our guest, Matthew D. Cohen to our chat today. The information shared is not meant to be legal counsel and should not be taken as such. Attorney Cohen will be speaking primarily from the perspective of federal legislation but will try to share state specific resources or differentiate between state and federal laws whenever possible.
 
Attorney Cohen, could you start by telling us what prompted you to write your book?

Matthew Cohen
Sure. I have been working with children with disabilities and their families for over 25 years.  The law is very complicated and many families feel overwhelmed by all the rules and procedures.   In addition, the law changes regularly and is confusing. Many times, the schools do not provide parents with accurate information about the programs they offer or about their rights.

I do lots of speaking about these issues around the country. Everywhere I go, families feel frustrated and express a need for more information about how to better advocate for their children. This book was my effort to provide a more in depth and understandable source of information for parents to use to help them to get appropriate services. It can be ordered through our website at http://www.monahan-cohen.com/ or by calling our office at 312-419-0252.

Nanci - The Balanced Mind Parent Network    
You brought up the point that schools don't always offer full information about programming and legal rights. How much is it the parent’s responsibility to figure out the laws vs. a schools obligation to let families know what they are entitled to? 

Matthew Cohen
Unfortunately there is no "right" answer, as the law is complicated and can be interpreted many ways.   However, the school is obligated to provide parents with annual notice of their overall rights (if their child is already in special education). There are many specific rights that apply in a given situation and schools are required to explain those rights to parents in relation to the particular issue.

For example, if a parent requests that their child be evaluated the school must give the parents a response, the reason for the decision, and the recourse the parents have if they disagree with the decision. Many of the steps in the special education process have rules specific to those steps. However, the rules are complicated, and sometimes the school staff may not even be fully aware of all the rules. In addition, the school is not obligated to provide a full explanation of all of the safeguards in every interaction. So there is a disconnect between the school's broader obligation to inform parents and their obligation in a specific situation.

That is why it is so important for parents to have some awareness of how the law works without just relying on the school for information. If the parents have questions they are always allowed to ask the school to provide a full copy of all of their rights. This can also be obtained from the state department of public instruction or state board of education (or whatever the name is in the particular state).

eeyore16     
What can a parent do if the school continues to call the police liaison when the child is having outbursts and the parent is working and cannot leave work to get the child?

Matthew Cohen     
Technically, the school is allowed to involve the police is they feel a crime has been committed. However, they often involve the police unnecessarily or just to scare the child or have greater control. If problems are recurring and particularly if the police officer is being brought in a lot, the parent should ask whether the child's needs have been appropriately evaluated whether they have been getting appropriate or sufficient services, and whether there may be a need for a Functional Behavioral Analysis and Behavior Intervention Plan.

With a good analysis and behavior plan, and adequate emotional and behavioral supports, it should be less necessary to either call the police officer or the parent. The behavior plan can also provide a hierarchy of interventions, which can spell out what the school can/should do under different circumstances. Hopefully, a number of positive and/or more limited interventions should be available (and hopefully implemented in an effective way) so that calling the police, if needed, is far down the list of steps.

Whether calling the parents should be encouraged or discouraged is complicated. On the one hand, you don't want them calling you every time there is a minor problem that they should be addressing internally. On the other hand, if there is either a pattern of problems or a single serious problem, and particularly if the school does not seem to be managing it well, the parent may want/need to be called, in order to assure that they are aware of what is happening and can try to protect their child's interests.

Nanci - The Balanced Mind Parent Network    
I have a question from a discussion that several of our volunteers had the other day regarding signing IEPs. It seems that there is considerable variation between states as to whether or not parents should or must sign the IEP.  Is there any reason for this and are there any legal constraints that come with not signing an IEP?

Matthew Cohen     
There is variability in relation to this, so it is important to check your state's regulations about this. However, in most states, the parents' signature is relevant only in relation to 1) when the parent is asked to consent to an evaluation; 2) when asked for initial consent to the child being made eligible for spec education; 3) when asked for consent for a reevaluation.

In most states, the parent’s signature at the IEP meeting only signifies documentation that they were present and/or received specified documents listed by their signature. However, some states require the parents to sign the IEP, indicating they agree with it. In other states, where this is not the case, parents sometimes think that if they don't sign the IEP, it isn't legally effective or binding. Unless the state specifically requires parent signature, the refusal to sign does not limit the school's right to implement the IEP. In these situations, the parents' recourse is to request a due process hearing.

If the school is proposing to change the child's placement and the parent disagrees with that proposal, if they file a request for hearing right away (in the time period specified in state law), the child generally stays in the placement provided for in the last agreed upon IEP. However, there are some exceptions to this in situations where the child is being moved for serious disciplinary problems to an interim alternative placement. Parents should never assume that refusing to sign means the school cannot do what the parents object to.

However, under a recent amendment to the regulations, the parents do now have the power to withdraw their child from special education altogether. This is a very serious decision which may make sense under some circumstances, but also has very serious risks, including the loss of all special education services and the loss of the procedural protections provided by the special education laws. If the parents remove their child from special education eligibility, they cannot complain about the school's failure to provide their child a free appropriate education during time the parents withdrew the child.

Molly     
Can you talk about how I can demonstrate an "appropriate" placement? My daughter is currently in a "non-public placement", i.e., private school, but it is paid for by the public schools. The problem is that the school is really geared toward autism-spectrum disorders (my daughter is the only one with BP). Plus the school is REALLY small (only 25 kids) and thus she is one of only 3 girls. Can I make a case that this is not an "appropriate" placement? Do you have any tips?

Matthew Cohen     
I can't give specific legal advice, but there are several general principles that are relevant to whether a child is receiving an appropriate education. First, court interpretations generally state that the schools are not obligated to provide the best possible education but are required an education that is designed to allow the child to achieve meaningful benefit from the experience. Evidence to suggest that the child is not making progress or is experiencing serious difficulties within the program would be helpful in demonstrating this. Sometimes, it is helpful to look at the child test data, grades, behavior reports, and IEPs to track whether they are progressing, both academically and behaviorally.

In addition, sometimes it is useful to get outside evaluations from experts in the areas of the child's disabilities to assess the extent of their needs, how they are progressing and what is needed (and what is undesirable) in the program they should have. This also must be considered by the school, though it is not binding. In addition, under the IDEA 2004 amendments (to the federal special education law) the schools are required to provide programs that are based on scientific research to the extent practicable.

One issue to explore is whether the program the school is providing is based on research. This is something an outside evaluator might also address. There may also be research on the problems that you are describing that would show that the way the program is set up is contrary to the research. For example (and I don't know if there is research that says this), if research showed that it is undesirable for kids to be isolated in a class predominantly or exclusively composed of kids of the opposite gender, that might also demonstrate why the program was not appropriate.

Learning     
We live in Illinois, our daughter has been in a Delaware school for the past six months. She graduates 8th grade next week. She is AD/LD with some bipolar tendencies. We plan on sending her to a school in downstate Illinois. Is there any way we can obtain financial support for the school part from our local high school district?

Matthew Cohen     
Again, I can't give specific legal advice. However, there are several broad concerns. First, unless the student is enrolled in the school system (even if they are not attending), the school is not obligated to develop an IEP for them. Unless the school has the chance to develop an IEP for the student, there is little basis to argue that the school does not have an appropriate program and that the private school is necessary.

If the private school was paid for by the elementary district previously, the high school district may be obligated to maintain the prior program until it has had the opportunity to evaluate the student and develop its own IEP, but it is not permanently bound by the IEP it inherits from the prior district. If the new district refuses to fund the program, the parent has the right to request a hearing to challenge the refusal.  However, since she is moving to a new private school, the stay put placement provisions I described earlier may or may not apply.

In any case, if a parent is considering making a placement in a private school because they do not believe the public school has or can offer an appropriate program, and they want the public school to pay for the private program, the parent is supposed to give the public school advance notice of the intention to make the private placement, that they are doing so because they don't think the public school is offering an appropriate program, and they want the public school to pay. This notice must be provided either in writing ten business days before making the private placement or at the most recent IEP meeting before the child is privately placed. 

Giving this notice does not guarantee that the public school will pay for the private placement, but not giving the notice gives the public school a defense that may allow them to avoid paying when otherwise, they might have been held responsible. When parents make these sorts of placements, they need to be aware that they are taking a risk that they will be financially liable for the full cost of the placement and may not be able to get funding from the district, even for the educational portion of the placement.

Blueyeliz     
My son's school (he is a high school sophomore) refused to do a real evaluation because they said he is "obviously really smart and just doesn't do the work". I specifically asked about executive function deficit and they shrugged. He is consistently failing, though clearly high intelligence. They eventually agreed only to a 504, which I don't think is working. He is failing almost every class. What now? (Diagnosed ADD & clinically depressed).

Matthew Cohen     
First, if you have private evaluations that document the problem, you obviously want the public school to consider them. They are obligated to consider them, but are not bound by them. However, if he is smart, but not doing the work, they have an obligation to figure out why, rather than just assume he is unmotivated.

If you made the request for him to be evaluated in writing, they are obligated to inform you in writing of the reasons they are refusing and of your right to seek a due process hearing to challenge the refusal. You can also seek to have a better 504 plan. If they refuse that, you also have a right to a hearing under Section 504. In either case, the school appears to be taking a narrow view of disability.

The law makes clear that the student's intelligence and/or ability to obtain passing grades or getting good scores on achievement tests should not be used as the only measures of whether the child has a disability. The school is supposed to evaluate the child's academic, developmental and functional performance. This should include problems such as disorganization, planning issues, impaired time management, etc. 

If you are unsuccessful in getting the school to acknowledge that these issues can be their responsibility, you may need to consult with a knowledgable special education advocate or attorney about what you can do to address this with the school.

toni     
My child was removed from school by his doctor for his outbursts. The doctor wanted him out so we could strip him of his meds and start over. He requested that the school home school him but they wanted to only half day him, which was NOT a possibility. Now they are taking me to court for it. Is there anything I can do?

Matthew Cohen     
First, there are rules about attendance that are state specific, so you need to consult your state's rules regarding compulsory attendance and their rules regarding medical authorization for homebound services. As they are threatening legal action, you should also seek legal help immediately. In general, if a doctor determines that a child cannot be at school for medical reasons, this is usually sufficient to satisfy the school, further, it should generally be a basis for the school to provide some form of home-based services (as provided by state law) and would satisfy some judges that the parent was acting according to medical advice.  However, every situation like this is different and the outcomes are unpredictable so it is wise to get legal help.

stamps4kris     
Can an IEP include educating staff on my child's disorder (bipolar)? My son is in a regular public school (self-contained class) but the teachers/social workers are inconsistent, engage in power struggles daily with him, send him to the office, look at him putting his head down as a "negative" and just don't seem to have a clue.

Matthew Cohen     
Absolutely, though this is easier said than done. Actually, the federal law provides not only that the school should provide the supports that the student needs, but also that they should provide the supports that the staff needs in order to implement the IEP effectively. This can include staff training, additional staff support or intervention, consultation from an expert, and other strategies. However, the school has to agree that it is necessary in order for it to get written in to the IEP.

Obviously, schools may be reluctant to admit that their staff is not adequately trained or carrying out the IEP appropriately, so this is not always easy. However, if you make the request and the school refuses, it may put you in a better position to make the argument later if the problems continue.

In addition, it is complicated because if you raise these concerns at the IEP meeting it is quite likely that some or all of the school staff will become insulted or defensive which creates complications of its own. So you have to both decide how bad things are and whether there is no choice but to force the issue at the IEP meeting. In any event, it is best to try to present the need/concern in as positive and non-personally attacking a manner as possible.

Sometimes, it may be helpful to talk with the administrator privately, either before or after the IEP meeting, to try to raise the issue in a way that still allows a solution where the staff saves face. However, if you do this, you also want to make sure that you are documenting the concerns you are presenting to the school, so that they can’t claim they didn't know about them at a later date.  If friendly efforts have not been successful, it is sometimes necessary to raise these issues directly at the IEP meeting. However, these situations also suggest the value of getting consultation from a knowledgeable special education advocate or attorney.

genejeanie     
What's the best way to gain permission to tape an IEP meeting if you're the parent (& not disabled or ESL)?

Matthew Cohen     
The law varies from state to state, but generally mutual consent is required. It may help to offer to provide a copy of the tape to the school or to explain reasons why the taping is beneficial that are not focused on lack of trust or intent to use the information as evidence later but there is no magic way to do this. It depends on the state law, the people involved and the circumstances.

Kylesmom
Our son has considerable difficulty with school refusal due to his instability (diagnosed with BP).  We’ve been told by our district that getting our child to school is our problem and is due to his ‘medical’ condition.  Are they correct or do we have any recourse to consider an alternative placement that may help to address the school refusal?

Matthew Cohen     
School refusal is something that impacts the child's ability to participate and benefit from school. If due to the child's disability, it should be evaluated and plans should be developed to address it. Those plans may involve the need for private school or an alternate setting, though that doesn't automatically follow, nor should it.  Ideally, there should be a plan that examines the things that are triggering the refusal and develops interventions to address those problems. That may require an alternate setting, but if it can be done well in the regular school, all the better.

Nanci - The Balanced Mind Parent Network 
   
Thank you so much for sharing your time and expertise with us. You've covered a tremendous amount of material and we very much appreciate having you as a guest.

Matthew Cohen     
Great.....folks wanting more information can find it on our website, http://www.monahan-cohen.com/  or in my book....also can find a list of upcoming presentations I am doing. Good luck to all.


Chat with Christoph Correll, M.D.

May 9, 2009

Did you miss our chat with Christopher Correll? Read the transcript of this exciting and informative chat. To stay informed about monthly Expert Chats and other The Balanced Mind Parent Network events, join our mailing list now by entering your email address and zip code in the box in the top right corner of the screen.

Biography

Christoph U. Correll, M.D., is a child and adolescent psychiatrist and research scientist. He graduated from the Medical School at the Free University of Berlin in Germany before completing his training in child, adolescent, and adult psychiatry at the Zucker Hillside Hospital and Schneider Children's Hospital, New York. Dr. Correll's primary interest is in the timely identification and treatment of young people who are in the earliest stages of severe mental illnesses, including psychotic disorders. Dr. Correll is a member of The Balanced Mind Parent Network's Scientific Advisory Council.


Nanci - The Balanced Mind Parent Network    
I am very pleased to welcome our guest today, Dr. Christoph Correll.

Christoph Correll MD
Good morning everybody.

Nanci - The Balanced Mind Parent Network     
Could you start out by telling us a little about the Recognition and Prevention program and perhaps some of your current research studies?

Christoph Correll MD     
Ok, I don't want to take too much time because this is more for members to ask questions, but here you go: 
The RAP program is an NIMH funded clinical and research clinic that evaluates, treats and follows adolescents and young adults who are thought to be at risk for developing a psychotic disorder. Recently, we have added a high risk component for youth who are thought to be at risk for developing bipolar disorder.

Lisa     
Dr. Correll, in your expert opinion, what would you say are the hallmark signs of early -onset bipolar disorder in children or early adolescents?

Christoph Correll MD     
I am not sure if you mean hallmark symptoms of early-onset bipolar disorder or early onset symptoms before the disorder has started. Can you please clarify?

Lisa  
Hallmark symptoms of the disorder.

Christoph Correll MD     
Well, that is easy because I am of the belief that youth should be diagnosed the same way as adults. That means that the DSM-IV diagnosis criteria need to be met: persistent and abnormal elated mood plus at least 3 B criteria or irritability plus at least 4 B criteria. In youth, the only question is whether the symptoms of full bipolar disorder last shorter because of brain maturational differences, or whether the shorter symptoms are part of a sub threshold disorder that might develop into full bipolar disorder.

Hallmark symptoms include as per Barbara Geller's work (in that they differentiate pretty well from ADHD): Mood elation or grandiosity, decreased need for sleep (not simply insomnia), increased thinking / or flight of ideas, increased energy/goal directed activities and hypersexuality.

Nanci - The Balanced Mind Parent Network     
Could you comment on the work underway for the DSM-V and what direction you'd like to see that go as far as defining early-onset bipolar disorder?

Christoph Correll MD
Hmm. This is difficult. I am not really familiar with the DSM-IV developments, as the organizers have so far taken a stance of not sharing much of the process. This has recently invited some criticism, as input from outside might be crucial to the success of the endeavor.

What I do know is that DSM-IV seems to base diagnoses more on longitudinal outcomes and follow up, that dimensional rather than yes/no categorical criteria and assessments/scales might be included and necessary to make a diagnosis and that sub threshold conditions might be defined more explicitly, so that they can be studied.

The potential risk of the dimensional approach and of including sub threshold conditions in a diagnostic manual is the potential to medicalize areas of "normality", which could lead to stigma, changes in self-perception and, possibly, unnecessary treatment.

natg     
Dr Correll, At what age can you determine that it is bipolar disorder? Right now, my son is diagnosed as mood disorder and ADHD. Does it become clearer as the child becomes older?

Christoph Correll MD     
I don't think that there is a specific age when you can or cannot diagnose bipolar disorder in a child. However, it is much easier when the child matures and the brain is closer to what an adult's brain is. In adolescence, the bipolar disorder symptoms are usually clearer. As your child matures, most likely the direction of the symptoms (progression or resolution or change) should become clearer.

lucinda     
Dr Correll - has there been any new research to indicate that early intervention and treatment for bipolar disorder can lead to a more normal adulthood or that early treatment could actually 'cure' bipolar disorder?

Christoph Correll MD     
This is the goal of the early identification and intervention movement and research. However, to date, we only have indirect evidence that early identification and intervention should improve functioning and outcome, simply by mitigation of otherwise impairing symptoms that usually interfere with the normal acquisition of skills. What is still unclear is whether there are critical brain developmental periods that - when helped with through intervention - could alter the underlying biology of a disease process. We clearly need more longitudinal research.

natg     
Dr Correll, Do you feel that antipsychotics alone work effectively for treatment of mood disorders?

Christoph Correll MD     
Yes. The newer, atypical antipsychotics have proven efficacy for mania in youth and in adults. In youth, the effects appear to be stronger and more beneficial than seen with conventional mood stabilizers, although we only have one single, short term real head-to-head comparison study (Seroquel versus Depakote). However, side effects can also be more problematic. This is why the lowest risk atypical antipsychotic(s) should be tried first and why we need more comparative effectiveness research in youth.

Unfortunately, many children and adolescents can not be helped with monotherapy of either lithium, an antiepileptic mood stabilizer or an atypical antipsychotic, and combination treatments are often needed, being more the rule than the exception, both in youth and in adults with bipolar disorder.

Since you were asking about "mood disorders", the issue of antidepressant efficacy of atypical antipsychotics is less uniform. Here Seroquel and, possibly, aripiprazole (Abilify) have the best data for atypical antipsychotics, with even stronger data in unipolar, unresponsive depression. For bipolar depression maintenance, lamotrigine (Lamictal) is a very good option that has also minimal side effects in general.

Nanci - The Balanced Mind Parent Network     
Aren't you currently working on a research study on weight gain with atypical antipsychotics? Could you comment on your hypotheses or findings or is it too soon? Weight gain is a significant concern for many of our families considering or using this classification of medication with their children.

Christoph Correll MD     
Yes, this is correct. We enrolled 516 children and adolescents age 4-19 who were started by their clinician for any clinical reason on any of the available atypical antipsychotics. Out of the 516 youth, more than 2/3 were antipsychotic naive, which gives us the chance to look at weight gain and other adverse effects independent of prior medication exposure.

What we found is that in general, kids are more susceptible to many of the antipsychotic side effects than adults. This includes sedation, muscle stiffness, weight gain and lipid abnormalities. They are not at higher risk for short-term glucose abnormalities and akathisia (restlessness).

In youth with prior antipsychotic exposure, the ranking order of weight gain and metabolic risk is similar to that in adults, with Zyprexa being the worst offender. In youth risperidone (Risperdal) seems to cause somewhat more weight gain than Seroquel whereas in adults they are similar. Abilify and Geodon look the best. However, in antipsychotic naive patients (those who never had been on an antipsychotic), all atypicals caused quite a bit of weight gain, particularly early on, The differences in weight gain became more apparent/greatest as treatment progressed for longer than 3-6 months. Importantly, however, although weight gain was substantial in the beginning with all atypicals, they clearly differentiated in terms of metabolic abnormalities. Here, risperidone and, especially Abilify looked the best (we did not have antipsychotic naive youth on Geodon -so we don't know the results there).

emilyfiorite     
Are there any signs of BP that we know of in a typical MRI scan or brain function scan? Some professionals claim that scans can show variations in the brain that can be used for diagnosis.

Christoph Correll MD     
Unfortunately, to date, there are no reliable biological or clinical tests that can predict or verify a diagnosis of bipolar disorder in kids or adults. The same is true for all other psychiatric diagnoses.

Lisa     
Dr. Correll, how does anxiety play a role in neurological disorders, and what are your recommendations for parents to help their children/adolescents?

Christoph Correll MD     
Anxiety is one of the most common psychiatric conditions, in adults and in youth. It is part of the normal human experience, but can get out of hand, get generalized and become interfering.  In youth, anxiety can have multiple reasons, including biological ones and psychosocial or environmental ones. The important thing in kids is that anxiety can mimic other conditions and be mistaken for symptoms of bipolar disorder or, even, psychosis. On the other hand, it can also be a harbinger of early sign of depression or later bipolar disorder or be a comorbidity.

Nanci - The Balanced Mind Parent Network     
We had a few questions come in about your discussion of atypical antipsychotics, so I'll try to combine them into one. 1) When using these medications, is it necessary to have regular blood work to monitor metabolic problems; 2) does muscle stiffness tend to go away if the medication is stopped; 3) is any particular atypical antipsychotic better or worse in combination with lithium?

Christoph Correll MD     
OK, these are good questions. Blood / Metabolic Monitoring: Yes, in kids, weight and height should be monitored monthly or at each psychiatrist visit. Blood work for fasting blood sugar and lipids should be performed before or very close to starting an antipsychotic, at 3 months and 6-monthly thereafter. If there is unexplained increased thirst and urination, sedation or somnolence, an extra blood test is needed, as this could be a sign of diabetes. 
Muscle stiffness goes away when the medication is lowered or stopped or switched to a lower risk antipsychotic. Abnormal involuntary movements (also called tardive dyskinesia) can be lasting, although the risk in kids seems to be lower (0.4% per year in 783 youth followed for up to a year in a meta-analysis we did recently), and, encouragingly, the symptoms also seem to abate upon stopping the antipsychotic (as kids have more brain receptor reserves than adults).

Antipsychotic combinations with lithium or other mood stabilizers have not been compared directly, so we do not know the answer to this question. However, my philosophy is to try to combine agents with the lowest or, at least, a complementary (opposite) side effect profile. Thus, I would try to avoid adding a more sedating or weight gain producing antipsychotic to lithium.

Nanci - The Balanced Mind Parent Network     
Here's one more before we move off of this discussion.

Roberta     
Dr. Correll, I have heard that there is a new antipsychotic now being studied that would have less of these side effects. Have you heard of this?

Christoph Correll MD     
Whenever "new" antipsychotics are studied they are usually touted to have either more or similar efficacy but clearly are safer than previous options. This can not be evaluated until the drug is really used in clinical practice.

Christoph Correll MD     
The newest antipsychotics on the market are Invega (paliperidone), which is basically like Risperdal, as it is its own metabolite and Fanapt (iloperidone), which is like a cross betweeen Risperdal and Geodon, having similar weight gain to Risperdal.

Antipsychotics that might come to the market are lurasidone and asenapine, but they also seem to be similar to the medium weight gain risk agents (Risperdal and Seroquel and Fanapt) that are already on the market.

teddyone     
Do you think that the rages that children with bipolar disorder have tend to decrease more as they age?

Christoph Correll MD     
Yes. As kids grow older, their frontal lobe develops more. The frontal lobe controls our impulses and behaviors. Also, reason and rationality increase with brain maturation. Thus, there is a good hope that the rages improve based on biological processes. In addition, psychosocial interventions can aide this process.

Nanci - The Balanced Mind Parent Network     
I think I just heard a collective sigh of relief from our audience!

teddyone     
Do you have any advice for when a child with bipolar disorder is stable on meds and is entering adolescent-teenage years? We've heard that the teenage years are the most difficult time as the child's body is growing and changing so much.

Christoph Correll MD     
Yes, adolescence is a difficult time period in our lives, even under the best of circumstances and even without any added illness. It is hard to predict how the hormonal changes and the increased desire for independence and being "normal" and accepted by peers will interact with the underlying disorder, the need for continued medication treatment, dealing with side effects, etc.

One has to be vigilant for signs of worsening and need to adjust medications, but also not become too controlling and "paranoid" about more "normal" adolescent moods and behaviors, as this runs the risk of pathologizing developmental tasks and getting into a power struggle.

be11e     
What are the chances of a recurring psychotic episode? Our psychiatrist said there is a possibility that my child will not have another psychotic episode. What steps can I take to prevent subsequent episodes? Is there any evidence that a single episode is not a predictor of future episodes?

Christoph Correll MD     
We have very little research on the trajectory and outcomes of psychotic episodes in bipolar disorder. In general the past predicts somewhat the future. Thus, once one had psychosis, it is more likely to have it again compared to when there has never been psychosis. However, there is a good chance that - particularly - when the mood remains stable -  no further psychotic episode will occur.

Preventive measures are the same as for prevention of mania or depression: Stress minimization, sleep hygiene, no night work, no drugs or more than minimal alcohol use.

Mitzi     
Dr. Correll- Do you have any comments on hypersomnia as it relates to either BP or a psychotic disorder? Any ideas on what to do to help this difficult symptom?

Christoph Correll MD     
Hypersomnia can either be symptom of depression or a medication side effect. It is not a typical symptom of mania or psychosis, unless there are negative symptoms of psychosis that are associated with amotivation, etc. If the reason is depression, this needs to be treated. If it is a side effect, the timing and/or dose of the medication might need to be adjusted, or it might need to be switched to a less sedating agent.

Roberta     
Bipolar disorder has been in my family for many generations. Grandparents, mother, father, aunts, uncles, siblings, myself and my daughters. Is it at all possible that my daughters will not pass on this disorder to their children?

Christoph Correll MD     
It is possible, but chances are high that your daughters will have a much-increased risk for having a mood disorder in their life.

emilyfiorite     
We always seem to have a problem with the use of amoxicillin or similar antibiotics. Mood swings are more frequent and much more severe. Is there any indication that these can interfere with mood stabilizers or antipsychotics? In particular, Risperdal and Seroquel?

Christoph Correll MD     
I am not aware of studies that have systematically assessed this. But there have been case reports. The question is whether the medication or the underlying illness that the antibiotic is used for is related to the mood instability.

Nanci - The Balanced Mind Parent Network     
We're almost at the end of our hour so let's wrap up with a more global question.

Lisa     
Dr. Correll, please discuss what you believe are the best treatments and course of action parents can take when their child is diagnosed with a mental illness?

Christoph Correll MD     
First, there needs to be a thorough diagnostic assessment to rule out medical causes, substance-related issues or traumatic or stressful events/situations that could be addressed directly. The diagnostic openness and evaluation needs to remain during the entire treatment, as kids develop and their mental disorders or problems can change and morph. Then, psychosocial and psychotherapeutic interventions should be explored and tried. 
If this is not helpful enough or if symptoms are too severe to treat with non-pharmacologic measures alone, medications need to be added. Side effects and efficacy need to be monitored closely and the medication(s) with the best efficacy and lowest side effect profile in a given person are to be favored. This might take several trials (and errors) until one gets there. Usually maintenance treatment is needed.

The question as to when to decrease medication doses or stop medication(s) is very difficult to answer. Usually, after only one episode, one could wait for a 1 year period of full recovery, both symptomatic and functionally, with return to the pre-illness onset baseline. If a second episode of mania occurs, very long maintenance is usually needed, If there is a strong family history, one might not even want to withdraw meds after the first episode.

Nanci - The Balanced Mind Parent Network 
Dr. Correll, we can't thank you enough for sharing your time and expertise. We covered a wide array of topics and I think I speak for our members when I say that I learned a great deal from you. We very much appreciate your dedication and work to helping our children.

Christoph Correll MD 
Thank you very much for inviting me into your chat room. It was a pleasure discussing very difficult but pertinent issues with you, and I hope that this discussion has been somewhat helpful.


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