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I'm Looking To Hear From Parents With Young Adult Autistic Sons Or Daughters Living In An Assisted Living Facilities With Daily Activities.

I'm Looking To Hear From Parents With Young Adult Autistic Sons Or Daughters Living In An Assisted Living Facilities With Daily Activities.

I have an Autistic son who turned 18 in 12/22. He is finishing his schooling years in June of 2023 with services offered until 2026. The post secondary program does not warrant much help for those on the spectrum. Many end up going back to the high school environment where there is an autsim program. We are looking to move out of state (from Maryland to the west coast of Florida). My son, I firmly believe, would benefit greatly by living in an environment in an assisted facility with daily… read more

posted January 18
A MyAutismTeam Member

I worked as a staff in Group Homes for 18 yrs in MI, And have owned my homes in WI for 10. In MI the biggest help would be contacting MORC the Macomb Oakland regional center. They only service Macomb and Oakland Counties, however they where the pilot program for the state and can offer information for most counties. In WI I have found WALA to be the most informative and beneficial resource, they are an advocacy for homes, residents and Caregivers. My child is only 6, I am very far away from considering an assisted living environment for him, if I ever do. In WI my son has a children's long term service team that help me find and establish therapies and services, they also provide respite resources and assistance with paying for any assistive devices beyond insurance, for instance Crash Pads for my future Stunt man. I was not as familiar with children's services in my state when I had my son but I had many personal contacts who where a great asset. I do know most States have some kind of ombudsman or advocate group for adults with disabilities, I would do an internet search for a specific area or check the DQA website. DQA as a government agency can be a bit of a pain to navigate but if there's anything to know they know it.

posted 1 day ago
A MyAutismTeam Member

Jessica… your insight was most helpful beyond the obvious. I would hope to take the mentality I’ve have advocating all these past 18 years and put forth the same if not more effort into this when the time comes. The staff at his school call me a “cut above” when it comes to handling things, so I hope I am trying my best. Where if I may ask were your experiences located? You seem like a wealth of knowledge. Did you contact any advocacy groups in that state or where the home was located for advice in your search? We’re there any state agencies that gave you any insight? Did the Development Disability Administration representative assigned to your son provide you any advice? Do you know of any forums on this such topic where parents or caregivers post about experiences? Thanks again!

posted 1 day ago
A MyAutismTeam Member

I own 2 group homes, I have worked with special needs all my adult life, and I have a son with ASD. Some group homes are really great and some aren't, in my experience a lot are ran like military academies. My advice to everyone thinking of group homes, including my prospective residents is always the same. 1. Don't settle for a structured tour of the facility with management, you need to see how the staff actually interact with residents.
2. Try for something close enough for regular visits. The saddest part of my job has always been watching the residents and their families drift apart, not from lack of love, but life goes on, weekly visits become monthly and then sometimes fewer than yearly. Distance is almost always a factor. 3. The other residents could potentially be dangerous, people like to use hippa as an excuse to not disclose that, but you don't need to know who's dangerous, you just need to know there is danger. Ask lots of questions About how behaviors are handled. 4. Make sure the food is good. If your kid is telling you the food is gross it probably actually is. 5. There are lots of community activities and programs and employment opportunities for your child to explore but make sure the home offers transportation or has access to public transportation. If they provide transportation, make sure you know their guidelines, if they tell you anywhere for anything, their blowing smoke... Group Homes and assisted living are generally staffed 24/7 but that doesn't mean there is always going to be a staff available for everything a resident wants when they want it. Staff generally have at minimum 4 other people to look after along with other duties. Things generally have to be planned for and structured into the schedule to ensure they happen. Group Homes are ment to offer everyone the opportunity to live as independently as possible while striving to develop new independent living skills. And I love having my group homes, but I was a staff for many many years before I was an owner. I've seen enough sad scary things to say , please don't trust anyone is caring for your child properly on blind faith alone, check up often, most states have a registry where you can see any history of incidents or violations a home has had. They are generally put out yearly.

posted 2 days ago

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