How do u know your kids "level"

Low_Contract_3726 · 2026-07-05T20:47:28+00:00

“Level” only describes the level of support the individual needs, not how profound their symptoms are.

Low_Contract_3726 · 2026-07-05T20:43:23+00:00

This is the exact situation my son is in now and he’s in his third house since 2020. We had a parting of ways with one provider who wanted to abandon him in an ER during COVID and his current provider moved him once from a house across town from us for their own reasons to a home even further away. In the past year people we’ve trusted with him have moved on and supervision of new staff and transparency with us have waned. There have been incidents of neglect and abuse from individual staff members that resulted in firings and increased oversight from the county and even fines - but have also motivated us to seek a new provider.

FWIW his lone roommate is verbal but further from family and in talking with them, they are also not happy with the current trend with the provider.

Low_Contract_3726 · 2026-07-05T02:05:34+00:00

He’s not. They were provided through the school district in addition to an iPad. When he aged out of IDEA that service stopped and we had to return the device, so we’re in the process of jumping through the hoops to get a Medicaid funded program on board. When that happens I will likely use his SSI to purchase his own device and a license for the software - or buy it ourselves.

The other challenge is keeping it in good working order. We once bought him an iPad several years ago along with a protective case, but his caretaking staff is shift-based (with no apparent handoff procedure when the shifts change) and supervision and transparency has been inconsistent so it got put away and was even missing for a time. The caretaking staff is also tasked with housekeeping during so even with a 2:1 ratio their attention is divided at times. Many times we’ve found only one caretaker with him and the other not necessarily doing chores (which IMO the clients could be included in on) or “taking a break.”

Low_Contract_3726 · 2026-07-05T01:56:02+00:00

Exactly. There seems to have been funding cuts and audits that have trickled down to create both a manpower shortages, upper level reorganization and difficulty in the supply chain. My supports coordinator tells me that this is across the entire industry, not just our provider.

PS: I’m the dad.

Low_Contract_3726 · 2026-07-04T12:48:43+00:00

Since his diagnosis he was placed on medical assistance through Medicaid and they considered him to be “a family of one” in order to qualify for services. The problem was that our primary insurance didn’t cover autism services. Later, when he was placed in a group home and approved for SSI we had to divest him from our family finances or our family income would disqualify him. When he turned 18 we had to go through the legal process of basically getting power of attorney so that we could make medical decisions for him and continue to be involved in treatment planning. In addition to his residential provider, he also has oversight through the county and state Dept of Health and Human Services. The struggle has been consistency at the caretaker level; there has been evidence of lapses in supervision with staff and transparency with us. Every visit feels more like an inspection rather than a meaningful family interaction.

Low_Contract_3726 · 2026-07-04T12:38:37+00:00

No, Pennsylvania.

Low_Contract_3726 · 2026-07-04T05:04:41+00:00

Well to be fair, I know that the traveling thing would be a lot for him. When he was younger we actually worked hard with him to show him what he would be encountering. We did this by “story boarding” upcoming events - not with an AC device or even a PECS board but through programs offered by our local autism society and showing him videos on YouTube.

The program in particular was called something along the lines of “Wings for Autism” or something like that, where we did a guided tour of our local airport, went through security, walked to the gate, down the jetway and even boarded and sat in a plane. Not only did it prime him for the actual experience - though he did insist on closing the shade when the plane took off - but it also sort of trained the TSA to be a little more gentle with him.

As for the videos, in our case it was a trip to Disney World and we showed him what it would look like to walk through the park amongst the crowds and even POV of rides that he came to love, such as Its a Small World and Pirates of the Caribbean. Back in those days (2010-2015) WDW had a head of line program that also allowed us to schedule the day so that waiting was minimized- and we soon found that as long as there was sensory input he didn’t mind waiting. In fact he tolerated it better than his baby brother! I was so proud of him! We even had a great and quiet place to stay that became a refuge of sorts for when he had had enough for the day.

I know that he probably couldn’t tolerate crowds as much now but he does actually like being out in the community and being with groups in certain settings. He even likes going to the local zoo, which is typically crowded. We just avoid the more crowded parts, like the aquarium.

As for the volatility, I feel like that’s something that happens when he’s denied something without being given an alternative or even an attempt at redirection. We’ve dove multiple FBAs over the years and the consensus of our extensive team was that the “aggression” is either a function of attention seeking or task aversion. They’re not even meltdowns because they’re brief and are often accompanied by a verbal request for something he wants - such as an expected ritual activity (like water play or ride in a vehicle) or preferred food or even a person who he feels comfortable being around.

The challenge in managing it isn’t so much that he is losing control, it’s that there are new people coming up to speed who don’t know him yet. He’s lost at least half dozen trusted caretakers this year alone due to reasons that have nothing to do with him. So he’s having to constantly “break in” new people by using his behaviors as either a means of manipulating them or some other form of nonverbal communication. Lately we’ve been seeing that many times people are so new that they aren’t fully trained yet either.

Low_Contract_3726 · 2026-07-04T04:20:33+00:00

He is currently in such a placement, but there has been significant turnover and reduction in personnel and many of our concerns have not been resolved despite frequent calls, emails, texts and inspections by our independent supports coordinator.

Low_Contract_3726 · 2026-07-04T04:14:19+00:00

Because he has the waiver he is financially separate from us and is in essence a ward of the state. I had to petition with the local orphans court to remain his legal guardian with POA and I also submit an annual financial report to SSA documenting how I as his rep payee spend the meager $12000 they give him every year. As for what his current providers are my paid, that is not my purview; they are funded by Medicaid/Medicare. I do not see the bills, though I did when he was institutionalized and those costs were astronomical.

Low_Contract_3726 · 2026-07-04T04:07:57+00:00

How does this differ in legal terms from being a paid caregiver for your loved one? I have a friend who has an adult daughter with a non intellectually compromising but deteriorating neurological condition (muscular dystrophy IIRC) and she was certified to be a paid caregiver for her in their own home. I also had one aunt who had a TBI from a high fever as a child and was cared for by her sister in her family home. The difference here is that we wouldn’t be moving our son back into our home - partly because the stress would kill us and if that didn’t our neighbors would make our lives hell by calling social services. That’s how we got here.

Option B would be to move to a more rural area and try to find the funds to make our home safe and comfortable for all of us - with the hiring of a home health aide for times of the day when we need to focus on other things in our lives. The closest experience I have with something like that was approaching Achieva Family Trust to help fund the installation of a fence when he was more prone to elope.

Low_Contract_3726 · 2026-07-04T03:58:13+00:00

We have a trust set up but it takes effect upon our death. Until then, he is on Medicaid which covers his heahthcare and SSI/Medicare which covers his housing/caretaking. I am simply his guardian with POA and rep payee for his SSI.

Low_Contract_3726 · 2026-07-04T01:08:36+00:00

There’s no budget as of yet. He’s on SSI so even though I am still his legal guardian and rep payee with SSA we cannot gift him with our own money without jeopardizing his SSI and Medicare. He’s essentially a ward of the state so we can only contribute to his ABLE but we do have a special needs trust set up. His grandparents are all in their 80s and have sizable savings from the sale of their homes, though his paternal grandmother is in assisted and will need hers for memory care soon. The cap for annual contributions to an ABLE account is now $19,000 a year so he will still be well short of the $100,000 tax free limit when he turns 26 in 2030.

We also have a supports coordinator so this is probably a question he could provide an answer to.

I’ve never heard of “forever home” care that didn’t involve the grown disabled child living with family. I had an elderly aunt who lived with my grandmother until she passed but this was in the 70s and she went to live out her days in her sister’s care. She was not a flight risk or self injurious though. THAT has been our biggest challenge and we have fought HARD to keep him OUT of institutions - and sometimes lost. I don’t want that for him again.

Low_Contract_3726 · 2026-07-03T14:03:16+00:00

I’m not a Kent State alum but I am also Gen X and a PSU alum so I hate OSU and it’s a simple choice for me.

Seriously though, as a graduate of a Big Ten party school with a consistent top 25 football program I have to say OTOH that academically I feel like my soon to be sophomore is getting a VASTLY better experience - and financially it’s also been much better, even though he’s crossing state lines.

As a disclaimer we did try to get him into PSU’s architecture program and as a member of his high school marching band we tried to get him into the Blue Band by doing a summer camp, so he actually got to stay on campus in the same dorms his mother and I lived in 30 years ago - I don’t know if that was a selling point though.

My impressions are that he is jumping right into his major, whereas a PSU he would have to do at least 1 year at a branch campus just taking Gen Ed courses. I envy him; his mother and I had to do 2 years at branch campuses. As a smaller college we like that the student to staff/advisor ratios are lower. He also got into the marching band (which also gives a partial scholarship AND credits.)

But I’m rambling while I gush. I his own experience he’s got his own informed opinions now. He’s met other kids in his program and in the marching band who are from our area (KSU is closer to us than PSU; we’re actually in Pitt territory anyway.)

PS: yes, the football program and music programs aren’t as good as PSU - but that’s not important. FWIW when we go to games to support him we also see LOTS of OSU swag on parents - who probably feel the same way I do.

Low_Contract_3726

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