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Things Your Mothers Want You to Know
General Advocacy Advice

Document everything in writing. The first rule of advocacy is that if it isn't written down, it didn't happen! Follow up every conversation with therapists, staff, administration, etc. with a note or letter saying "these are the points made during our conversation as I recall. If you disagree with the contents of conversation as I have stated them please respond in writing as soon as possible." If this is a very serious matter such as health or safety issues, or if you just want proof of receipt, send the letter certified mail with a return receipt. It may seem like a lot of extra work, but if there is an ongoing problem this will help resolve it much quicker. Also, when you put something in writing often results are obtained quicker as you are taken more seriously.

Write a general narrative about your child. It should be concise, no longer than 2 pages. Include their age, diagnosis, likes, dislikes, abilities, schooling received, therapies, current placement, etc. Also write what you would envision for your child as their best possible outcome. For example, if you see your child in a community integrated living situation working and socializing within the community then write that down. it doesn't matter where they currently are, or what funding constraints you've been told of, this is your vision for your child. Save this document on a computer so you can make adjustments as needed, or add an update page when appropriate. This letter can be used in many ways. When new personnel work with the individual you can give it to them, when you write letters advocating for services you can attach it, etc.

Write to your local, state, and national representatives and senators introducing yourself as a constituent family and attach your letter describing your child. Don't complain or ask for anything- just say " hi, how are ya, here we are." Then when you do write for assistance or to voice an opinion , they are familiar with you. They know you are a proactive person who knows what they are talking about. You have just a bit more credibility.

Know your candidates for all offices. Every year is an election year of some sorts. Be informed. Contact every candidate regardless of political party or level of government and ask what their platform on disability issues is. Be specific. Ask what about funding for community placement? What about home services? Whatever issues you face. Again, during the campaign send your letter & compliment the candidate on knowing the issues or ask why they are not aware of these issues and offer to educate them. Give them resources to contact to find out more. Then tell them you expect a follow up letter, once they have researched the issue, telling you their position.

Utilize natural supports. Yes, many services are required to be provided to individuals with disabilities. However, the families must also look for creative ways to solve problems too. For example, a family I know needed some additional therapy and socialization for their child with autism. Funding was unavailable as were opportunities. This parent approached high school honor groups to 'adopt' her son as a project. These young people carry out therapy activities and take him on social outings regularly. He has gained a great amount of independence and skill, the kids working with him have a greater awareness of what having a disability is like for both the individual and their family; and it didn't cost anyone anything! Groups often provide transportation, supplies, assistance in many forms as a volunteer community service. Utilize these agencies and organizations. Contact your local United Way for suggestions on where to look for the assistance you need.

A bit more to add from a MFH2 member: In addition to documenting conversations with a letter, start a telephone log.  Every time you call or are called by the school, therapist, etc.  log down the date, time, who you spoke to, what was discussed, & what was the response.  Then follow up with a letter.  And NEVER throw away the log.