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Records and Papers and Notes, Oh My!
By Luciana Randall, President

Most of our 150 monthly help requests start with “I don’t know if you can help me.”. “I’ll try” is the answer we always give. The bulk of our work involves helping people get the support they are entitled to, and often that means digging through or requesting paperwork. Many people and families struggle to get and keep stability in everyday life. Focusing on the often-difficult present day concerns leaves little time to consider, or even imagine, future needs. This article will help you keep things in order so that your future may be easier moving forward.

What is in your documents?
Make sure that written comments about you or your family member are professional and accurate. Permanent records like report cards, IEP’s, evaluations, and therapy notes, can direct the course of someone’s life decades after they are written. Comments should be professional and objective. Writing something like “Jackson responded in a loud voice” is accurate and observable, while the statement “Jackson was angry” is subjective and judgmental. If subjective language (labeling behavior with an intent or feeling based on the writer’s guess) is included in documents, it would be best to have that corrected. Judgmental language is not factual, and may get someone excluded from housing, school, or help programs. It can even be used against a person if they run into legal trouble decades after it was written. So read your notes and papers and try to make sure they are factual. If you ask for an edit, and an educator or clinician refuses to clean up what they wrote, you can attach your own explanation to that document for future reference, such as “Jackson uses a loud voice due to his hearing loss, and he does this if he is happy, sad, or mad.”

Records to keep
Keep initial evaluations and diagnoses, notes you may have made from infancy on, records of counseling or hospitalizations, school records like IEP’s and 504 plans, report cards, test scores, and unique essays or letters written by the person if they capture their personality or needs. Cards, letters, or emails from others talking about positive qualities or the needs of the person, like those from neighbors, teachers, aides, coaches, or other adults, can be useful, for instance, when making housing choices or in justice system procedures. Therapy notes from speech, occupational, physical, or talk therapists are often very necessary for supporting future needs in a variety of areas. Less is usually more, except when you need to find that right piece of paper to support a decision or help someone stay out of a bad situation.

Records to pitch
Routine doctor office visits, generic paperwork not unique to the person, unprofessionally written comments or documents, subjective or judgmental notes or paperwork, especially those that paint the person in an inaccurate negative light, are all things that can be discarded .

Why am I saving all this stuff?
Life is unpredictable, especially for people with disabilities. Learning, living, and working may require extra funding, and often means applying to government agencies to get support. Record reviews are needed for anything from heating assistance to Supplemental Security Income (SSI), supportive housing, food programs, Medicaid waivers, or special statuses like becoming a Dependent Adult Child for Social Security purposes. Scholarships, fellowships, awards, and grants similarly ask for documentation of accomplishments and needs. Justice system involvement, more common than anyone wants to think, is the most critical and life changing situation where good record keeping can protect someone from losing their freedom and allow them to live a life of personal significance in the community.

File that away
Please keep papers and digital records in a safe, water- and fireproof place, and keep a list of what you have somewhere else. Digitizing everything is not a bad practice if you have the time to scan or even take photos of papers to save in a Dropbox or other place you may keep electronic files. Maybe you won’t need everything you have, but you will feel a sense of relief when someday in the future, you locate that one key document that can help a person live their best life.

For more information, visit Autism Connection of PA at www.autismofpa.org.

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