20 February 2012

How to Advocate

Advocacy for Special Populations
First, please know that I am not an expert, on anything. I am just a special parent who happens to work in a law firm and have spent 14 years (7 of those as a single parent) learning the ropes of the disability world, connecting with people who know more than me, and fighting for the rights and services of my child, often the hard way. I also happen to be rather handy at research and word-smithing and yes, that helps, but each of us have a voice to be heard, so I'm happy to share what I know and what has worked for me in hopes that your fight is a little easier.

I know how incredibly overwhelming it can be finding the way through confusing systems of continually changing bureaucracy and trying to understand enough to even articulate an intelligible argument or even find the time to do so in between work, IEP meetings, doctors / specialist / therapy appointments, etc. and caring for high maintenance children while juggling all that daily life throws our way. I totally get it. You're tired. I'm tired. And perhaps that's what they are counting on, or perhaps they just don't know the realism of this new Medicaid Waiver plan on the families being served because they lack feedback? Either way, I firmly believe that if there were ever another Ice Age to strike while humans roamed the earth, it would be the special parents that would be left standing... Yes, we are that strong.

Simple Strategies
  • Document EVERYTHING. - I cannot stress this enough. Document anything and everything regarding services, care, concerns, events, and conversations you have. Each and every time you speak with someone, regardless of the issue, if it involves your child make a note of who you spoke with, time and date, and a note about your conversation. If you speak with someone, follow up with an email thanking them for their time and outline the conversation as you understood it. And keep every email.
  • File an Appeal. - If you have not already done so, and have had or will soon be having your Continued Needs Review (CNR) of your child's CAP plan with your case manager, ask for an appeal regarding service hours. If you do not have a trustworthy advocate in your case manager, INSIST upon an appeal. It is your right as a parent.
    • Note: NC DHHS is required to submit regular reports to General Assembly subcommittees on numbers of state-wide appeals; this is one way their position is justified - people are not fighting it and not providing feedback.
  • Kill 'em with Kindness (or at least professionalism!) - You know the old adage "you'll get more flies with honey than vinegar"? Well, it's true. But the more emotional the issue, the more difficult it is to hold your tongue and keep your cool (which is why I write first!) though channeling animosity at those in a position to ultimately help grant your wish will only discredit you and cause you not to be taken seriously. So, keep every encounter respectful and tactful. If this is difficult, consider writing a letter - and then let someone else read it who is not as emotionally invested and who can provide objective feedback.
  • Ask Questions. - Ask your provider, ask your case manager, ask your provider agency, ask your local non-profit advocacy groups, ask The Arc of NC or your local Arc chapter, friends and fellow parents, and anyone who can provide you with tidbits of information.
  • Take Notes. - Jot down information or even questions you feel are important that align with your concerns. Record names, organizations, and offices that you've been given and keep up with your contacts.
  • Research and Read. - Google is a wonderful thing! 
    • An "advanced search," for instance, will allow you to search specifically for .pdfs if you're looking for documents (even the ones that aren't where they used to be).
    • Learn how to navigate to NC General Assembly website - anything that happens in court or legislature is a matter of public record; it's just a matter of knowing where to look. 
    • Most organizations and members of legislature have websites and there's a lot of good information on them.
  • Ask More Questions & Take More Notes. - Ask questions about the stuff you've found and read. Ask others about information you've received.
  • Strength in Numbers. - Unite with other parents, professionals, care-givers, providers, anyone who shares your concerns and can relay those concerns in a diplomatic manner; we've spent our children's lives networking for answers.
    • Connect with people you know to be strong and effective advocates, those who represent themselves diplomatically and professionally. Again, channeling the best of intentions through anger and aggression will only undermine your position and cause; likewise, joining forces with someone who advocates in this way, will discredit you as well and cause your message not to be taken seriously.
Making Contact in Writing
Writing a letter expressing your concerns is one of the the best ways to take action again the effects of HB 916. It doesn't matter if you fully understand the law or the dynamics behind the financial agenda. It doesn't matter if you're not a good writer. The point is that you express yourself and make it real for those basing their legislative actions on the statistics and figures given to them.
  • Find Your Representatives. - See Speak Up!
  • Know Your Target. - Take the time to read up on the people you are writing personal letters to. Appeal to their stated concerns by relating their key issues to the effects of service loss on your child and your family's lives.
  • Meet the "Gate-keepers." - Call the offices of the people you intend to connect with and get to know the person on the phone or the person assigned to the area of your concern and who will receive your email first or open your mail. Be nice and build a rapport - this person can help you!
  • Write. 
    • Refer to your notes.
    • Write one glorious heartfelt script to Governor Perdue and 'Carbon Copy' (CC) all the rest.
    • If you are a business owner, are part of a family business, or have a supportive and understanding boss (who gives you permission), write your letter on your business letterhead. Elected officials bank on financial support from local business owners.
    • Consider brief personal enclosure letters to key people (see Speak Up! for details and contact information): 
    • Contact the Centers for Medicare and Medicaid Services (CMS):
    • Always, Always be Professional.
    • Make it Personal. 
      • Tell them your story.
      • Tell them about your child.
      • Tell them about what a typical day is like caring for your child.
      • Tell them about the supports and services you receive for your child and how a decrease in those supports and services will affect your child's life and that of your family; tell them what your supports and services mean to you.
      • Tell them how you are supported by your case manager and what that personal relationship means; how that simply cannot be replaced by central call center of strangers they plan to implement.
      • Include a photo of your child who receives Medicaid Waiver benefits; either a snapshot or embed a photo in your own custom letterhead. They need to see the faces of our children!
  • Ask for What You Want.
    • Ask for the action you would like to see - even if you know it's likely to happen. Tell them anyway.
    • Ask for a written response to your concerns stating their current position on the HB 916 matter and their intentions.
    • Ask to be kept informed.
  • Carbon Copy (CC). - At the bottom on your letter, after your signature and list of any enclosures, include a CC (carbon copy) list of those you intend to send a copy to from your local representatives to federal agencies to advocacy groups etc.
    • Suggestions of folks to CC:
      • On correspondence to members of the NC General Assembly, CC  Consultant, Dr. Patricia Porter.
      • CC US Health and Human Services.
      • CC Centers for Medicare and Medicaid Services (CMS).
      • CC US Administration on Developmental Disabilities (ADD).
      • CC NC Department of Health and Human Services (DHHS).
      • CC Disability Rights NC Director, Vicki Smith.
    • Note: If you are sending a blanket email to all Members of the NC House and Senate, I recommend utilizing the BCC (blind carbon copy) for all members of the legislature (BCC prevents the recipients from seeing who else is included in the BCC). But DO list any other agencies and officials as CC so that they are known (i.e. US HHS, US CMA, US ADD, etc.) and be sure to acknowledge each party and / or organization in your greeting appropriately with their titles...
    •  Again, please see Speak Up! for more information and contact information.
  • Copy and Scan!  
    • If you don't have a printer or cannot make 200 copies, and would like to send (or deliver in person!) hard copies, call or go by a local copy center such Office Depot or a UPS franchise, and inquire about discount copies for a disability cause; some folks do have a heart! OR...
    • Scan you letter in its entirety with enclosures into a digital .pdf and forward via email to all the rest. Don't forget to request a "return receipt" if your mail client permits.
  • Send! - Email, fax, snail-mail, hand write it if you have to.
  • Follow Up. - After one week, if you have received no acknowledgment, call or email the 'gatekeeper' you made contact with and confirm receipt of your correspondence. Ask when you can expect a response - and document it.
  • Be the Squeaky Wheel. - Week two: call / email again. Ask again, politely.
  • Make an Appointment with Your Representatives. - If you live in the greater Triangle area and are able to travel, or if your local representatives have and office near you, make an appointment to talk to them about your concerns. If you're able, bring your child with you (and someone to care for him or her while you meet) and make an introduction. If travel is not an option, make an appointment for a telephone conference to speak to them personally.

... more to come ...
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Location: Raleigh, NC 27609, USA