Securing services for a young adult child
How hard should it be?
Over on The Great Leap, Laura McKenna recounted her experiences in securing support for her son, Ian, who has autism. In a post for 30 June 2022 entitled, “The Secret World of Disability Support: Who wins? Those with middle class parents,” reported her experiences. In Ms. McKenna’s report about navigating processes to register for Supplemental Security Income (readers may know it as “SSI”) from the US Social Security Administration, she recounted the difficulties she encountered in completing registration.
So, I went through a year of paperwork with no certainty about whether my son would actually qualify for a benefit and with no knowledge about what that benefit would be.
In Ms. McKenna’s view (and I bet she has it right), the hurdles one encounters in establishing eligibility are daunting and essentially establish a mechanism that disqaulifies those who have fewer priviledges. It sounds like if one is not a college-educated, well-connected, advocate, registering successfully may be impossible for some individuals and parents. On top of the mystery around qualification and benefits, this process is entirely dependent on having a parent or guardian with a significant amount time and resources.
A parent has to find the forms, know how to fill out the forms, know how to respond to the errors, be able to wait on hold with the government for up to an hour, maintain records, locate services, and interact with government agencies on a daily basis until they die. Managing an adult child’s life becomes the full time job for one parent. Only middle class families have those resources.
I don’t think that’s a good way to run a railroad! Yo, legally sharp readers! Is there anything in laws (Americans with Disabilities Act, for example) that prohibits agencies, organizations, or other entities from making it hard to secure services? I understand that it’s important for agencies to avoid fraud, of course, but….
Read Ms. McKenn’s “The Secret World of Disability Support: Who wins? Those with middle class parents,” on her site, The Great Leap.