Tips on Navigating The System

When everything was hopeless, Abraham believed anyway, deciding to live not on the basis of what he saw he couldn't do but on what God said he would do.  (315, The Message Bible)

I was recently asked to speak about “navigating the system” to a NAMI group.   I decided to share some of the lessons I’ve learned after almost fifteen years of receiving mental healthcare.  Here are my notes:

 1.CSBs – Every county has a community service board.  They’re not the best but if you don’t have insurance they can be a lifesaver.

 2.Use Insurance if possible 

3.Good therapists may require to pay out of pocket – my therapist does

 4.A good fit is key – change service providers if not a good fit; if a service won’t allow you to change, then it is not a recovery oriented service; ask your child what therapies, services THEY are interested in, don’t force them into something they don’t believe in – no matter how great it is recommended, it will fail without the consumer’s interest and belief

 My Story: Depression after first year of college.  Mom recognized it and took me to see her psychiatrist.Took years to find the right medication.  Terrible doctors and incompetent therapists – if I
could do over, I would spent more time looking for the right fit in both.  Someone who is knowledgeable and compassionate and takes a person seriously and has good rapport is important, especially for young people.  I wish I had taken finding the right person more seriously instead of getting worse with people who weren’t helping.

 5.Pursue recovery oriented services – individualized; honors choice; no coercion; collaborative; can choose own doctors/therapists; offers more than medication; validates the individual; talks about wellness more than illness – SkyLand Trail, Wellness Centers

6.Research treatments – research services in your area, especially if going to college or about to move – be prepared – I learned that from going to rural colleges and relapsing after not getting my needs met

7.Advocate for what you need

8.Obtaining disability may be the key to independence!  I thought my life would be sad as a “disabled person” but the extra money enabled me to move out of my parents’ house.  I ended up being ready to work just six months later.  I became a CPS and I discovered that one can still work while on disability.  Getting disability escalated my recovery, instead of diminishing it, so beware of inner ableism.

9.There are people called Benefit Navigators whose job it is to info you on how to go back to work while on disability.  They are fabulous people.  Sally Atwell is the benefits navigator that serves the Atlanta area and is a great resource. There are a lot of myths out there about working and disability but don’t despair until you find out the facts!  Her phone number is 404-350-7589.

10.Notice cycles/patterns of behavior and ruts – a change may be needed – for goodness sake, if someone keeps on going back to the hospital, ask yourself what they are needing and see if it can be accomplished outside of a hospital setting – Breaking cycles and patterns of behavior is key in recovery

11.Always remember that recovery is consumer driven.

12.Art and music and horticulture can be just important to recovery as medication or talk therapy.

13. Medication is not the cornerstone of recovery.  I take medication but… Medication is great
For some and not for others.  It is never a cure.  If a service is more focused on medication than the individual then it is not recovery oriented have found sleep to be the most important factor in my wellness.  Healing begins with validation and feeling heard.

14.Do not underestimate the value of peer support.  DBT is the therapy that changed my life but I was introduced to it long before I took it seriously.  What made me take it seriously is seeing results with other peers and hearing how excited they were.  I was inspired by peer bloggers and wanted what they had.  When someone is in the depths of despair, the only thing that can reach them is validation
and being heard and this is easiest supplied by someone who has already been there.

I wish that I had been introduced to peer support earlier.  When I first started hearing and feelingthings, I felt so stigmatized and weird.  If I could have been introduced to someone else who
experienced those same things but was doing well, my life would have been saved much earlier.  I would have been given hope when the professionals were not providing it.  This is why I am so excited to get training in the hearing voices network and to offer their support groups soon.

To sum up, I want to leave you with three things that I have learned:

Advocate for yourself – no one knows what you need better than you.

Secondly, if you believe you need clinical care, then spend time making sure you have the right fit.  Feeling heard and validated by your mental health professional leads to trust and being able to trust others is essential to one’s well being.

Finally, believe in yourself and in your loved one.  You are worth fighting for and you are worthy of being heard, validated and treated with respect.  No matter what obstacles are in your way, I firmly believe that every person has the right and the ability to lead a better life for themselves if only they will put forth the work.  I believe in you!