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7 Steps before you hire a special ed advocate

Mother and son, K. Sawyer Photography, flickr, creative commonsIt’s August and students are beginning to go back to school.  Many parents are thinking and worrying  about the educational needs of their child. Are they receiving the services they need in their classroom? What are their rights if they think they need more services? If they have tried to get special education services before and perhaps they were stalled with “your child is fine, no need for services.”!  Some might  think the school staff is correct; after all they are the experts. Others will attempt to get services either on their own or by hiring an educational advocate or attorney.

I know the system all too well. I knew it before I adopted my son; I was a child advocate in the State Office for Children in the 1980s. I have continued advocating for hundreds of students over my career. Initially, I thought it would be a breeze– after all I knew what I was doing. Then we had the first meeting about my own son, the one with all the staff around the table. There were his evaluations and test results. Yes,  I knew this was a concern but wait, what did the specialist just say?  I felt alone and stuck on what she just said. Unfortunately, no one in the room realized I was no longer actively participating.

From that meeting on I never went to another meeting by myself. I had a friend who was a trained advocate who became Josh’s. She knew when to answer for me and when I was able to state my concerns myself. As I reflect over the last 18 years, I know that as a parent I was unable to keep my emotions at bay.

Although Josh is no longer in school, I continue to advocate for students. Over the last year I have received several calls from families referred to me because they were stuck. Many hadn’t done their initial research before they hired someone, often costing them thousands of dollars for minimal services. This trend is starting to widen and families are going broke trying to access services for their child. That concerns me deeply.

Unfortunately, in Massachusetts, advocates are not licensed. There are no regulations or mandated trainings to become an educational advocate. Some advocates are parents who have learned the process through advocating for their own child.  Others have been trained by the Federation for Children with Special Needs (FCSN) or another source, still others have held jobs in Special Education. There are many good advocates out there but there are others who won’t match your needs.

Here are 7 steps you can take to make selecting and working with a special education advocate more effective for you:

1.  If your child receives services already really read the Parent Right Document you have received.  It’s a wealth of knowledge about your rights. If you are new to special education, google MA BSEA and locate “information for families,” you will locate the guide there.

2.  Always take someone to the meeting with you as a note taker or so that they can help you ask questions. Sometimes all you need is a friend who knows you and can stop the meeting so you can refocus. If it’s too overwhelming, you have the right to say “we need to stop the meeting today and reschedule after I absorb what you just told me.”

3.  If you decide to hire an educational advocate, please understand there are some limited resources that may be able to connect you to a free or low cost special education advocate. The FCSN at times has a few. Unfortunately, advocacy is not paid for through your insurance so it will be an out of pocket expense. That said, some advocates have a sliding fee scale and will work with you on a payment plan.

4.  Before you pay a retainer to an advocate do your homework. Ask your friends, colleagues, professionals working with your child or contact PPAL and ask for a referral of someone who does a good job and has a track record of getting needed services. Your child may have a mental illness or has autism so you want someone who understands the social emotional demands to ensure the IEP is written to have goals to address it.

5.  Many experienced advocates provide an initial phone consult at no charge. Use this time to interview the advocate to ensure that this is who you want to work with, ask about your rights as a family. How long they have been providing services, what their specialty is when providing educational advocacy. They may ask for a small retainer to review the file.

6.  Prior to signing a contract, ask what the fee will be, the retainer and approximately how much it will cost to get services for your child.

7.  Finally, never place your child in an out of state program at your own cost unless you have at least gone to Mediation and had a consult with a Special Education Attorney who can advise you on the merits of your case. If not you could spend your life savings on a short term fix.

 Lynn A. Powers, MSW is a special education advocate who provides advocacy for students 3-22. Lynn specializes in working with students with social emotional needs to make effective progress. She hopes her hard won knowledge over 30 years can help families who have children with special needs.

 

Where is the #hashtag advocacy for children’s mental health?

hashtagsEverywhere I look, I see hashtags. They are on Twitter, Facebook, Instagram and other social networks. They help us find others who are share our interests – just look up #mentalhealthawareness on Instagram and browse through the images. Hashtags are used to promote awareness, too. “Look at this,” hashtags say, “I care about this and you should too.”

Hashtags have really caught our attention at key moments. In 2014, #BringBackOurGirls drew the world’s attention to the kidnapping of 276 schoolgirls by the terrorist group Boko Haram. Sharing #JeSuisCharlie let everyone know that you were standing with others for freedom of speech after the massacre of 12 people at the Paris newspaper Charlie Hebdo. Started in response to the trial (and then acquittal) of George Zimmerman, #BlackLivesMatter compels us to focus on systemic racism and police brutality and is one of the most successful hashtags. In our sound-bite society, hashtags can capture a thought, unify a public conversation and link us together.

But some are better than others. I am on the hunt for one that can springboard children’s mental health into everyone’s awareness. Sometimes, when families call with a heartbreaking story I think we should use #TreatmentWorksWhenYouCanGetIt or #FightingStigmaComesAfterFightingForCare. Then I realize we want to galvanize people, not sadden them.

Hashtags became truly popular after first being dismissed as too nerdy. Chris Messina, who introduced hashtags in 2007, was told by Twitter that it was never going to catch on. His original idea was to organize tweets and messages into groups so that people interested in #mentalhealth, for instance, could sort through other people’s comments and see only the ones they were interested in. It’s hard to think today of how we would do any of this without hashtags.

Using hashtags didn’t stop with grouping posts or tweets. Organizing messages is like library science. It helps us locate and gather information but then what? How do we move from informing to messages we can act on?

Almost 3 billion people worldwide are on social media every day. Some of us get our news and updates online while some simply keep up with friends and relatives. Smart, effective hashtags have a unique ability to reach tens of thousands with a quick, clear message.

Thousands have become hashtag activists, realizing early on that we can bring the public’s attention and empathy to a cause or circumstance that would have been unnoticed. Although this can create solidarity and visibility, there is debate about whether awareness can lead to significant change or move a sleeping giant. The jury is still out. What hashtag advocacy does is reframe the public conversation and perception. We have a chance to do this for children’s mental health.

We have a chance to change how people see our families – the parents and siblings of children, youth and young adults with mental health challenges. To me, they are all unsung heroes, hanging in there, innovating on some days, sighing silently on others. When NFL player Ray Rice was caught on video camera punching his then-fiance, many wondered why she didn’t leave him. Stories from domestic abuse survivors poured out on social media under #WhyIStayed which changed the public’s view.  Can we do the same for our families and create a hashtag that leads to an avalanche of stories? What about #WhyIWontGiveUp or #NotStoppingAnytimeSoon ?

Because mental health issues show up as behavior, many young people are judged, isolated and belittled. It breaks our hearts as parents to see them hurt for things they cannot (yet) manage or control. I remember having many conversations with my son’s therapist about the constantly moving line between “cannot” and “will not” and then realizing so much fell into the “cannot” category. I fervently wished I could make the light go on for others too. Can we try out #ItsCantNotWont or #WhyIWontEngage ?

Take a look at the top hashtags for mental health. Most are organized around diagnosis such as #anxiety or #ptsd. A few link to resources such as #suicideprevention. So far, organizing discussions by diagnosis and content hasn’t moved us forward. Messages have to be strong, compelling and clear. They also have to let others know that your issue should be a top priority. Does #mentalhealthmatters really make it matter more to anyone new?

We need a hashtag for children’s mental health. Even better, we need a succession of them so that when one fades away another will replace it. We need a hashtag that will change the negative media images of young men with mental illness doing violent things into an I-get-it-now moment. One that will catch the attention and energy of Americans focused elsewhere. After all, 1 in 5 children experience a mental health issue each year, which means just about everyone knows a child or youth dealing with these issues.

What’s your suggestion?  #LetsHearIt