Please Don’t Pitch Those Records! May 17, 2011


Special Needs Alliance

The season for filling out tax returns and gearing up for spring cleaning arrived. Your local newspaper has published a chart showing how long tax records should be kept and you are ready to pitch those messy boxes of older medical and school records. Hold on.

Parents of a child with special needs—or individuals who themselves had special needs as children—should not assume that old records have no value. Indeed, old records may be absolutely essential to establish eligibility for the many public benefit programs that require proof that a person had a disability prior to reaching the age of 22. Consider carefully which records to place in the recycle bin and which records to maintain and re-label. Counterintuitive as it may seem, hoarding paperwork is a good idea.

Even if eligibility for government benefits or other programs is not a concern at this time (whether because the disabilities seem mild or the finances sound), some records may be critically important in the future. The guiding principle of your record retention strategy should be "Hope for the best, but plan for the worst." Although all individuals, including children with special needs, should be encouraged to maximize their potential, some may
never be fully self-supporting as adults. They may have to rely, at least in part, on public benefit programs to meet their basic food, shelter, and healthcare needs.


An adult with a disability may qualify for certain benefits and government programs if he or she can establish that the onset of the disability (when the first manifestations or symptoms appeared, or when treatment was first sought, even if not officially diagnosed until later) occurred during the developmental years, prior to reaching age 22. Many types of documentation are difficult, if not impossible, to recover or re-create if destroyed or lost. Without good records, it can become much more challenging to establish the onset of a potentially disabling condition or impairments resulting from an accident or injury.

As noted earlier, many public benefit programs require proof that a person had a disability prior to reaching the age of 22. Some programs for school-age children are more generous and less rigid in their eligibility guidelines than those for adults. Therefore, it is not safe to assume that he or she will automatically qualify for benefits and services as an adult simply because, as a child, he or she had a learning disability, received developmental disability board services, or participated in special education programs. In addition, a person might need documentation of a disabling 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 might become necessary.

These are some of the most important documents that might be useful throughout a person’s lifetime:

• Individual education plans (IEPs), multi-factored evaluations (MFEs), 504 plans, and any 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, records which show levels of functioning prior to the incident (IQ tests, grades, educational achievements, skills) as well as records showing the severity of the illness or injuries sustained and functional level after recovery

• Documentation that the individual received services from agencies that focus on individuals with special needs or disabilities
• Records from job training programs, sheltered, subsidized or supported employment, including workshop employment

• Letters from coaches, camp counselors, neighbors, religious or community leaders- anyone not related by blood or marriage (i.e., without a personal interest in the granting of benefits), whose objective observations may someday help to establish how different or special the child was at the time

• Letters from employers or supervisors preserving the story of how the child or young adult obtained a job, whether the job was created or tailor-made for the employee, and any problems or issues on the job

• Court documents regarding guardianship/conservatorship, settlements for personal injuries or orders concerning legal capacity

• Applications or inquiries about various benefits, even if ultimately denied. Do not rely on phone calls and notes. Always write letters, keep a copy, send by certified mail, keep the green return  receipt card, and hold on to any reply you receive

• Even the written observations and recollections of a parent, sibling, or other relative about the early years of the individual with  disabilities are better than nothing. A Letter of Intent or other document can lend credence to the then-contemporaneous insights of a person whose memory now fails them or who has since died and is unable to convey those thoughts 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 own work record

• Childhood Disability Benefits (CDB) for adults, formerly called Disabled Adult Child (DAC) benefits, based on the earnings record of a parent wage-earner who is permanently disabled, retired, or deceased

• Supplemental Security Income (SSI) for children, and adults without substantial work records

• Medicare

• Medicaid

• Income and health insurance benefits available through a parent’s employer (public or private) for dependent adult children

• Residential services and other benefits through public Developmental Disability boards

• Medicaid Waiver programs

• Military Survivor Benefits Plans

• Veterans Benefits for dependent, so-called “Helpless Child” benefits


You may have moved over the years, and collecting historical records from multiple medical providers and school systems maybe time-consuming and costly. Some significant impairments are not easily visible and seeing is not believing; even if logic would indicate that the disabling condition occurred at birth or prior to age 22, the proof is in the paper. The Health Insurance Portability and Accountability Act (HIPAA) of 1996, designed to protect the privacy of one’s medical records, may also make it more difficult for you to access very important medical records of the adult you are trying to assist. Be sure to check your own state’s law before paying for records or retrieval fees. These costs are sometimes reduced or waived when they are in connection with applications
for government benefits.

Professionals who treated or assisted a person in the past may have retired, moved, changed jobs, or passed away. Schools, nonprofit agencies, and other programs can merge with other organizations, evolve or become defunct—making record re-creation a nightmare, if possible at all. Tracking down old acquaintances who might still remember enough details to provide testimony or a written statement may prove futile, even in the age of Facebook and Google. And, even if your search for the individual or entity is successful, it may not produce the desired result because many professionals, such as attorneys and physicians, or government programs, such as public schools, may not be required to keep records indefinitely. Even if retained, records can be inaccessible for all practica purposes due to improper storage or storage without any meaningful retrieval system. One school system recently discovered boxes of water-damaged records stored below the stage in the auditorium. It is expected to take years to sort and scan the records that are legible and then develop a system for categorizing them.

Elder law practitioners often encounter crisis situations when the sudden death of an elderly mother leaves a middle-aged child with disabilities without the financial and other help he needs to live on his own. In a typical situation, desperate siblings ask how their brother can possibly remain in the family home on Supplemental Security Income (SSI) alone, a needs-based program that provides very limited financial help for food and shelter. He needs more income to live independently, but the family had never applied for Childhood Disability Benefits (CDB) on the earnings record of their long-deceased father and now it is very difficult to prove that their 50- year old brother’s disability began before the age of 22.

Without the live testimony of parents at a Social Security hearing, whatever old documents can be found must speak for themselves. In one happy situation, months of digging through school records and decades-old medical records produced enough documentation to win a ruling that their brother was eligible for the substantially higher non-needs-based CDB benefits and Medicare. Without those old records to sift through, however, their brother would not now be receiving all the benefits to which he was entitled under the system his father had paid into for his entire working life.

In short, resist the urge to toss those yellowing papers just because they’re more than three, seven, or forty-seven 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 and accessible. If you prefer, invest in a scanner and build a virtual stockpile of those paper files, but then make sure to back the files up and leave the separate “virtual file” in a safe place. Regardless of how the records are saved, please let someone else, such as another family member, your attorney, or another trusted advisor know where the records are kept. If the individuals with special needs do as well as everyone hopes and have their own households one day, they can be given custody of their records and make their own decisions about keeping, scanning, or shredding. •

The authors practice law in northeast Ohio with the firm of Hickman & Lowder Co., L.P.A. Janet L. Lowder is a Certified Elder Law Attorney (CELA) and a principal in the firm. Ms. Lowder is a member of the National Academy of Elder Law Attorneys (NAELA) and President Elect of the Special Needs Alliance. Mary B. McKee, a shareholder in the firm, practices in the area of Social Security Disability and Veterans Benefits, and belongs to the National Organization of Social Security Claimants’ Representatives (NOSSCR). Contact information for a Special Needs Alliance member in your state can be obtained by calling toll-free 1-877-572-8472, or by visiting You can read more about the authors at

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