School’s out, spring’s gone, taxes are filed and it’s time to clean out the study / spare room. You’re probably thinking about whether you can throw away all those files and boxes of old records. We’re all supposed to “go green,” right?
Parents of a child with special needs or individuals who had special needs as a child, however, should carefully consider which records to place in the recycle bin and which records to maintain and re-label. Counterintuitive as it may seem, hoarding sometimes helps. Even if eligibility for government benefits or other programs is not a concern at this time, some records may be critically important in the future.
The guiding principle of the record retention strategy is “Hope for the best but plan for the worst.” While many children with special needs will find jobs that enable them to be self-sufficient or pursue educational goals and then start careers, others may rely on public benefit programs.
Many public benefit programs require proof that a person had a disability prior to reaching the age of 22. A person might need documentation of such a condition to acquire appropriate accommodations in vocational training or college, which may one day lead to a career or the fulfillment of educational goals. Others may need to document when a childhood condition was originally discovered because a recurrence or exacerbation in adulthood could put substantial gainful employment on hold and qualifying for various benefits may become necessary.
Some of the most important documents that may be useful throughout a person’s lifetime would include the following:
- Individual education plans (IEPs), multi-factored evaluations (MFEs), 504 plans, and the recommendations for accommodations
- Results of medical exams, particularly by specialists such as neurologists and psychologists
- If there was an acute illness, accident or trauma that resulted in permanent changes in the individual’s cognitive skills or physical abilities, medical records from this period of time to show the before and after picture
- Documentation that the individual received services from agencies that focus on individuals with special needs or disabilities
- Records from job training programs or workshop employment
- Letters from coaches, camp counselors, neighbors, religious or community leaders –anyone not related to you whose observations may someday help to establish how different or special your child was
- Letters from employers preserving the story of how your child got the job, whether the job was created or tailor-made for your child, and any problems or issues on the job
- Court documents regarding guardianship/conservatorship, settlements for personal injuries or orders concerning legal capacity
Having appropriate documentation may make it easier for a person to qualify for invaluable public benefits in the future, including many of the following:
- Social Security Disability Insurance (SSDI) based on the individual’s work record or adult Childhood Disability Benefits (CDB, formerly DAC) based on the earnings of a parent who is permanently disabled, retired, or deceased
- Supplemental Security Income (SSI)
- Income and health insurance benefits available through a parent’s employer for dependent adult children
- Supported living and other benefits through public Developmental Disability boards
- Medicaid Waiver programs
- Military Survivor Benefits Plans 
Destroying certain records can be like throwing out the baby with the bathwater – they can be impossible to recreate. Keep in mind that professionals such as attorneys and physicians, and even some government programs such as public schools, may not be required to keep records indefinitely.
Professionals who may have assisted a person in the past may have since retired, moved, changed jobs or even passed away. Schools, non-profit agencies and other programs can merge with other organizations, evolve or even become extinct – making record recreation a nightmare, if even possible at all. Tracing back through the years to track down the people who might still remember enough details to provide testimony or a written statement may prove futile, even in the age of Facebook and Google.
In short, resist the urge to toss those yellowing papers just because they’re more than three, seven, or 37 years old. They may well have more than sentimental value one day. So reach for your goals and encourage individuals with special needs to follow their dreams, but please keep those old records somewhere safe that is conveniently accessible. It is perfectly acceptable to invest in a scanner and build a virtual stockpile of those paper files. If these kids happen to do as well as everyone hopes and have their own households one day, they can do their own housecleaning!
About this Newsletter: We hope you find this newsletter useful and informative, but it is not the same as legal counsel. A free newsletter is ultimately worth everything it costs you; you rely on it at your own risk. Good legal advice includes a review of all of the facts of your situation, including many that may at first blush seem to you not to matter. The plan it generates is sensitive to your goals and wishes while taking into account a whole panoply of laws, rules and practices, many not published. That is what The Special Needs Alliance is all about. Contact information for a member in your state may be obtained by calling toll-free (877) 572-8472, or by visiting the Special Needs Alliance online.