You are nine years old. Your autism prevents you from speaking to others, and loud noises send you into a panic. If you wander from home, how would you respond to a police officer yelling at you to stop? Now, what if you were an adult in your twenties in the same situation? All too often, such encounters end in tragedy. People with any one of dozens of conditions have been hurt or killed by police because the police did not know of the disability, or how to approach someone with that disability safely.
A fairly recent "premise alert program" in Illinois now allows families and caregivers to share medical information about loved ones with police. The program aims to reduce incidents in which the police assume the person is on drugs or violently mentally ill when in fact he or she simply needs appropriate communication techniques.
Under the program, the police have information about people with disabilities on standard computer screens. The information is on record at 911 call centers and is available to police, firefighters and paramedics in an emergency. Proponents say the police will be less apt to use physical force against autistic people, firefighters will know where to find someone who is trapped by paralysis in a burning house, and paramedics will know if someone who is unconscious has a heart condition.
Reporting medical information is voluntary, as is whether a location is cooperating or has the necessary computer-aided dispatch system. According to one report (http://archives.chicagotribune.com/2009/sep/21/news/chi-ap-il-911-disabilities), about 85 of 102 Illinois counties could offer the program now but relatively few do, or offer alternative programs at a local level. Most people's first response would be to urge that programs go online immediately everywhere, and that people with disabilities sign up.
Privacy and autonomy v. safety
However, "premise alert programs" raise at least two major controversies that bubble just beneath the surface of the social issue that is disability. The first is whether ordinary rights of privacy and self-determination apply to adults with disabilities. The second is how much control family and other caregivers have over their disabled charges.
Some adults with cognitive or communication disabilities are perfectly able to deal with most of what life has to offer them. They choose to sign up or not, based on their own perceptions of privacy, self-disclosure, and autonomy. But because we have no perfectly-written and universally applicable standard that determines which adults should make their own decisions, we should begin to see some interesting lawsuits in the near future.
Being the caregiver of an adult is different. Although a hearty number of caregivers are doing their best, some do not have the needs of those under their care at heart (see http://www.vachss.com/help_text/disabled_abuse.html for some examples). The adult under care in this case is dependent upon the caregiver providing full and accurate information. Caregivers may also be concerned that the police will draw their weapons in certain situations rather than catch up on their reading about the medical condition of the suspect.
So should you sign up?
If you, as an adult with disabilities, feel safety is your first concern, please sign up for the local "premise alert program." Be very sure your information is accurate and complete. However, be realistic. Signing up will not make you completely safe in all situations.
If you are a caregiver, you know that your loved one will not always be by your side and consider signing up. Again, be as complete and accurate as possible.
In all cases, now that the "premise alert program" is place in this area, it's time for the next step. Tell the authorities to give more and better training about cognitive and communication disabilities to those whose snap decisions could end our lives.