The 80s featured some really good movies and some rather goofy ones. I’ll leave it up to you, the reader, to decide which description fits the movie Ghostbusters from 1984. For those of you who may not have seen it, the film follows three rather unorthodox professors who, after being kicked out of their university positions, set up their own private business in New York to seek out and counter problematic paranormal activity. The title soundtrack riffed on the lyric “Who you gonna call?” (Spoiler alert: the answer is “Ghostbusters”.)
People with disabilities trying to manage their benefits and supports services, housing, employment and healthcare ask that a lot. When you get a cryptic letter from Social Security telling you that your benefit has been reduced, or a letter from Medicaid saying you’ve been auto-enrolled in managed care, even though you are not in the category requiring managed care, when you cannot find an apartment that is both affordable and accessible, then (that’s right) “Who you gonna call?” If your problem is as complex as deciding whether you might have a discrimination suit or as simple as choosing a restaurant with a ramp, “Who you gonna call?” or “Who you gonna…” even email? It would be great if there was any one-stop disability information and resource service—"Stressbusters” or “Bottleneckbusters” perhaps? If any reader knows one, please contact us. In the meantime, though, there are groups and people you CAN call to get you started, finding your disability-related information or overcoming your disability-related obstacle. Since I am located geographically in Illinois, I am going to provide examples from my location. This list, however, is not exhaustive, and I’d love your input to make it longer.
To find anyone responsible for a certain aspect of services under the Department of Human Services Disability Division, check this staff list: http://www.dhs.state.il.us/page.aspx?item=98454.
For questions about Medicaid use this department and staff list for health and Family Services (HFS): https://www.illinois.gov/hfs/About/Pages/PhoneDirectory.aspx
To find your Pre-Admissions Screening (PAS) Agency, which acts as a gateway to all services, use this link: http://www.dhs.state.il.us/page.aspx?module=12&officetype=&county and enter “Developmental Disabilities Services” in the first drop down and enter your county in the second drop down.
To find a ton of information on advocacy, to sign up for education webinars and live conferences and to be both privy and a party to legislative action, please get to know and then join the ARC of Illinois: https://www.thearcofil.org/
If you are a self-advocate, who wants to get more involved and make your voice heard, register for the Speak Up and Speak Out Summit: https://www.speakupspeakoutsummit.org/
If you or your family member used to live in a 7-16 person facility, and you want to be in a much smaller home that is well-integrated in the community, you can find information and support here: https://www.ligasfamilyadvocateprogram.org/
For the contact information of many disability resources statewide, and for a toolbox to further your advocacy efforts, Illinois Life Span is a good place to start: https://www.illinoislifespan.org/
To help the entire family find a way to manage the support to live as independently as possible in the community, look at: https://www.familysupportnetwork.org/
For reliable and detailed information around health care and health insurance, the best place to start is with Family to Family: https://www.familyvoicesillinois.org/
If you need help finding and paying for assistive technology, this is a good place to start: https://www.iltech.org/
If you are looking for businesses that are either owned and run by or are supportive and aware of the needs of people with disabilities, here is where you go: https://www.jjslist.com/
If you are looking for education and training for self-advocates, family members and disability support professionals, look to the University of Illinois’ Institute on Disability and Human Development and their Family Clinic: https://ahs.uic.edu/disability-human-development/
If you have heard about ABLE accounts through my blog or any other source, and you want more information about and comparisons of ABLE accounts in different states, check out the ABLE National Resource Center at: http://ablenrc.org/
If you live in metropolitan Chicago and want an advocacy partner, need legal services, or have independent living questions, Access Living can get you started: https://www.accessliving.org/index.php/
If you are a person with a disability seeking peer support, information and referral, support for the transition from high school to adult services, or another partner for advocacy, and you don’t live in metropolitan Chicago, please find your local Center for Independent Living (CIL) here: https://www.incil.org/tag/cook-suburban/
If you want to make sure that your estate-planning attorney and financial planner have experience working with people with disabilities and understand some of the particular challenges they face, you can cross-reference your planners here at the Academy of Special Needs Planners: https://specialneedsanswers.com/
You can also research whether your attorney is listed at the National Association of Elder Law Attorneys (NAELA) here: https://www.naela.org/
Sometime, disability supports and services can be as elusive and perplexing as the supernatural, and interacting with rule-laden government programs can feel like a paranormal experience.They won’t show up in hazmat suits with proton packs and guns, or containment units.But the people and organizations above will come to your rescue and leave you feeling much more relieved and less haunted.Just call.