Any BTDT about getting in-home help for ASD?

[egao_gakari]

Hi all, I am trying to help out a friend who is the relative of two kids with ASD. Older boy is a "classic" case according to her, younger girl can't speak and isn't potty trained but eager to make friends and play. The school system has a waiting list for services beyond basic special education classes. A while back a single slot opened up for speech therapy and they chose the boy to receive those services since he's older. My friend lives with/financially supports them, their neurotypical younger brother, and their custodial parent, but my friend doesn't have parental/guardianship rights.

 

My friend is at her wits' end trying to mother these kids. Their custodial parent works, then comes home, changes, and goes out on the town. So my friend is basically a single parent, but with no legal authority. My friend also works a very high-stress job with many hours. She knows the kids need more help than what they're getting in school, but the custodial parent "hates paperwork" and so far has dodged doing what's necessary to even find out whether insurance will cover things like in-home therapy or a PCA to help the older boy do things like shower. My friend, due to the job and the single-parenting, doesn't have the time to research it, and in the end she knows the custodial parent will need to be the one to actually apply for any of this. Like I said, she's at her wits' end.

 

I told my friend I would try to do the research and that my goal would be to get everything set so that all the custodial parent needs to do is sign on the dotted line. But I don't really have any experience with pursuing this kind of assistance, and I don't know how far I can get since I am a total third party. I thought the first thing I would do is call their insurance company and see if in-home services are covered and what needs to be done to prove they qualify... but any thoughts/advice would be greatly appreciated.

 

In particular, anybody who lives in MA/has experience with MassHealth, please chime in!

[winterbaby]

I hope you and your friend can work it out. I would find it hard to swallow constant "going out on the town" in someone I was financially supporting but I guess that's neither here nor there. But the first step is to be very present in parenting so that's kind of not compatible. I would encourage your friend to think about how she can encourage the mom to be more active because being enabled in total passivity is not what's best for her and her kids. Unless she wants to sign over rights to your friend. But your instinct is probably correct that you are not going to be able to set up someone else's affairs to sign on the dotted line level without their involvement. Another thing is, they want interaction with the parent when they are giving these services. It is not all focused on the child. My own situation was different because I was told my child doesn't qualify for much because she's high-functioning, but we seriously spent almost as much time sitting around in tedious meetings with multiple bureaucrats discussing goals etc. as my daughter did receiving actual therapy.

[egao_gakari]

I would find it hard to swallow constant "going out on the town" in someone I was financially supporting but I guess that's neither here nor there. But the first step is to be very present in parenting so that's kind of not compatible. I would encourage your friend to think about how she can encourage the mom to be more active because being enabled in total passivity is not what's best for her and her kids. Unless she wants to sign over rights to your friend. 

 

Yes to all of this. My friend is currently considering what options she has for consequences. When they moved in with her she asked the mom to make two promises: 1) No pot in the house. 2) No bringing home men. She agreed to both, and my friend recently found out she's consistently broken both agreements. The mother's explanation: "Well it was a rule so OF COURSE I had to break it!"

 

If it was just her, I think she would be out on her butt. But my friend is worried about the wellbeing of the kids. She doesn't have the legal right to separate them from their mother. She fought hard to get them out of foster care and back with family. She didn't realize exactly how useless their mother is, and how little practical support she would get from the other family members. She believes parenting these kids is her God-given vocation, and right now she just can't contemplate putting them back in foster care. She can't figure out how to protect them from further trauma while also holding their mother accountable. They miss their mom a lot when she doesn't come home.

 

I suggested that she begin by sending the mother's cat to the Animal Rescue. The mom's single solitary chore is to clean the litterbox, and she doesn't--so the house smells like a particularly unpleasant barn. My friend winced a little and admitted she's gotten fond of the cat.

 

Something's gotta give, though. I'm contemplating just sneaking the cat out of the house by myself  :leaving:

[PeterPan]

Yeah, I was going to suggest talking with child services. It sounds like they need to be brought back in. The placement isn't working, so it needs to be modified. I'm not up on it, but I'm assuming they could go through the courts and make things happen. What's happening now is out and out neglect.

 

As for the ps, poor or not, they have the legal responsibility to hire people and provide the services dictated by the test scores. The fact that it's not happening means they need an advocate. If the mom were well, she'd be doing it. So now the only person caring for them has no legal authority to. It's not helpful to the children to let that continue.

 

Yes, they love their mother. It sounds like a really sad situation. But I think it goes back to child services and the law and what can be done, since the bio mom is not in a position to tell herself to do things. Have you considered contacting a lawyer?

Edited June 7, 2017 by OhElizabeth

[winterbaby]

My concern about child services would be the risk that the kids could end up with a third party through the system, traumatized by being cut off from everything they know. I don't know how likely that is or what can be done to avoid it - I would encourage your friend to talk to a lawyer, particularly about what if anything can be done by the mother to freely give your friend the legal right to be involved with the kids, rather than call CPS and cross your fingers that they decide your friend is the right person. CPS to a certain extent looks at "the home" rather than the individual and if you got an unfriendly worker they could construe it as the two of them together are equally responsible keeping a home with pot and men coming in and out and therefore it is unacceptable. Would your friend be willing to put the mom out as the price of keeping the kids? At the very least I would clean the litter box myself rather than let it stink while arguing whose responsibility it is. And talk to a lawyer before owning up to anything untoward in one's own home.

[Crimson Wife]

Do the children have formal medical diagnoses of ASD from a developmental pediatrician/child psychiatrist/pediatric neurologist or just an "educational" diagnosis through the school? If they don't have a diagnosis from a M.D., getting one would be the first step to obtaining services.

 

If they have a medical diagnosis, then the next step is finding out whether the health insurance policy is subject to the MA state autism mandate. I don't know whether MassHealth is the state's Medicaid plan (ours is called Medi-Cal) or the Obamacare exchange (ours is called Covered California). Medicaid now covers autism treatment in all 50 states. In that case, the pediatrician would make a referral to an Applied Behavioral Analysis provider who accepts Medicaid. If it's an exchange plan, you would have to find out whether it is a covered benefit. The children may qualify for a waiver to get Medicaid as secondary coverage for co-pays & deductibles.

 

The state Dept. of Developmental Services may provide services that the health insurance and schools do not such as respite care or in-home supportive services/personal care. I don't know about MA, but here in CA the Regional Center charges middle-class & up families a cost-share for those services. So we've never had the budget to accept them. They are available if we wanted to pay the cost-share for them.

 

Your friend should get the mom to sign a Health Care Proxy document to appoint your friend as an "agent" to act on her children's behalf specifically for healthcare-related decisions. When I have my parents or IL's babysit my kids for more than just a few hours, I sign a health care proxy just in case.