D-Day appointment tonight at 6

Discussion in 'General Parenting' started by Winnielg, Mar 15, 2013.

  1. Winnielg

    Winnielg New Member

    Well tonight is our weekly appointment with the Autism Spectrum Disorders (ASD) specialist, who is truly fantastic and speaks difficult child's language. In this appointment we will be laying out difficult children living arrangements/options come the end of June. Bottom line is that he is no longer welcome to live with us past July 1st. Cannot imagine this not being explosive. Great weekend ahead, I am sure! SIGH
  2. Bunny

    Bunny Active Member

    Good luck at the appointment. I hope it goes well.
  3. JJJ

    JJJ Active Member

    Always a hard step to take but often necessary. Good luck tonight.
  4. Winnielg

    Winnielg New Member

    Thank you!
  5. Californiablonde

    Californiablonde Well-Known Member

    Best of luck to you.
  6. StressedM0mma

    StressedM0mma Active Member

    Good Luck I hope things are not too bad.
  7. buddy

    buddy New Member

    Thinking of you!
  8. buddy

    buddy New Member

    Hoping things went ok...
  9. Bunny

    Bunny Active Member

    How did the appointment go?
  10. DDD

    DDD Well-Known Member

    Fingers crossed there were viable options. Hugs DDD
  11. greenrene

    greenrene Member

    I'm very curious as to what the options for difficult child's living arrangements are after July 1. I'm just thinking about the future with my own difficult child... I hope the appointment went well.
  12. Winnielg

    Winnielg New Member

    I am not exactly sure. I guess as well as can be expected. We did not have to call the police or mobile crisis so I assume I should see this as positive. When husband laid out the plan details, all of which have the outcome of difficult child leaving the home by the end of June, difficult child just kept saying "We'll then just kick me out". I probably do not have to explain/detail to you guys the complete and utter denial, lack of personal responsibility and blame game that ensued on difficult child's behalf.

    His big defense was that he has friends that he has emotionally, psychologically and verbally abused who have not deserted him as we are clearly doing. There is no reply to this as I know he barely talks to anyone outside the house and the social workers and Special Education teacher at school have said he has alienated most of the people at this new school ( he started there in Sept). The Autism Spectrum Disorders (ASD) therapist asked if he had ever physically assaulted any of these friends and difficult child kept insisting that clearly that was not the point but that his apparent abandonment by people who supposedly loved him was.

    He then turned on the therapist with vileness for awhile declaring all the ways he was incompetent and did not know how to connect with his patients.

    In the end, I am not really sure what reality difficult child created in order for him to get in the car and come home. All is peaceful right now. And we need to find a way to keep trying to teach him functional independence and feel safe until the end of June.
  13. buddy

    buddy New Member

    Yes, take what positive you can. Knowing what COULD have happened, this, I suppose, was a good outcome.

    It seems with his makeup, that it might be expected he would react on the surface in a negative and deflecting way. But, over time, hopefully it will sink in. If there is any way to help him view it as a next step instead of the natural consequence that it in part is (but will make him more defensive I imagine) I hope that could help him to accept little by little what is to come.

    You have put together a lot of support and I pray that people in those places will be able to see how he can take advantage of what they have to offer. If not, you need to be safe. You have a back up for where he will live so it is not like he is really being thrown out as a disabled person.

    You've done a great job. I really hope he is able to make progress.
  14. Winnielg

    Winnielg New Member

    Greene and DDD. Sorry I guess I was typing and did not see your posts. I am going to explain at length because I hope it will be helpful. It took my months and hundreds of phone calls to navigate this so if what I learned helps someone else then GREAT!

    I have been working for just over a year to put things in place for the 'in case we get hit by a bus' idea and difficult child needs someone to help him. We do not expect family to have to be responsible for him for life so I started making phone calls to both mental health and developmental agencies. What I found was that our school district, who I thought had been pretty good and kind of still do, let us down. They should have been steering us in this direction all along, but instead kept saying difficult child was college bound and never went that route.

    The difference between developmental and mental health options in NYS is vast. We ended up choosing developmental because mental health is so weirdly broad and the services offered were more geared toward psychiatric commitment rather that living in the community.

    So we applied to the Office of Persons with Developmental Disabilities, aka OPWDD, in NYS to have him declared disabled. We were told by many that this is a lengthly process and most people have to appeal and they get denied the first time. To navigate these systems is insane.

    Now I am pretty type A when it comes to documentation and paperwork for difficult child as over the years I have had to provide all kinds of stuff to various providers and agencies, so I do not know if that helped me in the end, but difficult child was approved by OPWDD the first time. Now he has had a documented IEP history since age 6 and an autism diagnosis on at least some paperwork - they like that better than Asbergers evidently. I also included every psychiatric report (I think I have 4), police reports, mobile crisis documents, a copy of his latest IEP which included him having to be transferred to another school, his psychiatric ward discharge paperwork, school discipline copies, and his NYS PINS application ( which was a complete waste of time - a story for another time). When my husband and I got the letter stating that OPWDD has declared difficult child developmentally disabled and eligible for services, we were thrilled but chuckled as to the statement that they deemed him so.

    Now comes the weird part. OPWDD gave me a list of approved agencies to choose from to apply for these services. I called several to get a feel for them and picked one that seemed the most knowledgeable about Autism Spectrum Disorders (ASD).

    The state is moving away from group home idea to a community service support (CSS) system which works out great for Autism Spectrum Disorders (ASD) folks as most are too high functioning to be eligible for a group home. My contact said difficult child is a perfect candidate for CSS and that is what we are working towards. This would include living assistance paid for by disability, but employment supports, a case coordinator (which is currently me), potentially transportation to medical appts and other necessary living supports.

    In NYS things get dicey. Here is the rule. In order for me to get difficult child these services he HAS to have Medicaid. That is the payment that OPWDD will
    accept for services which include respite, translational comment supports, employment training, assistance with living etc.

    In NYS if one is under 18 and living at home you have to apply for a Medicaid waiver. After 18 but before 21 you have to go to social security and apply for supplemental disability which then gets you Medicaid. This is because evidently in NYS it is the responsibility of the parents to insure their child to age 21, or at least that is what I was told. So I started the process of applying with the agency. They wrote up an ISP or individual service plan document to submit for the application. This was based on several lengthy questionnaires and interviews with desired outcomes that we came up with. Ours included difficult child having an outcome of being safe in the community rather than in our home, possibly taking a course at a community college, having a job and receiving medical services.

    Now we had to stop the process because difficult child had a trust account set up by his maternal grandparents when he was born and because it has over $2000 in it he would be ineligible for Medicaid. We are in the process of working with a lawyer to have this $$ moved to a special needs or supplemental trust so medicaid cannot deny him based on income.

    So now we are in a waiting game for applying. However with more violent recent events I called my contact at the agency and asked her how soon after he turned 18 could the CSS supports be put into place. I guess after he gets approved from SSDI and Medicaid which takes 30 days then the CSS could take up to 9-12 months. EEK! I explained where we were safety wise and because of violence and the fact that while difficult child can stay temporarily at Bio moms in IN he will essentially be homeless July 1st. She said this puts him in Tier 1 status and there may be a way for us to get the same supports from NYS without them getting reimbursed by Medicaid and then they can work on the CSS in the meantime.

    So this is where we are right now and the supports that hopefully difficult child will receive in July or within a year.

    I hope his answers some questions on the process. Anyone can contact me directly should they have any other questions. I have learned a lot!
  15. Winnielg

    Winnielg New Member

    Thanks Buddy. I hope you are right.
  16. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My son is in CSS and it's great. He is moving toward the community, but not pushed too fast. He is going to move to a subsidized apartment (a NICE one) next year. In Wisconsin, you can start services at eighteen and he is nineteen. The only thing keeping him from moving out now is us. As his guardian, I want him to have one more year at home before he moves out.
    My son is doing great. The services are wonderful. I do know that you can't get violent in the aprtment complex where Sonic is going to live. You have to follow the rules and be safe for your neighbors or you have to leave. So your son will have no choice but to calm down...unless it is different where you live. Violent acting adults here still go to group homes for their safety and that of others...they have 24/7 custodial care there as well as other services. Either way, they try to move them toward the community.
  17. Winnielg

    Winnielg New Member

    Good to know Midwest. I have worried about the violent aspect rules. But I guess we will find this out as we move forward. Sigh

    Glad he is doing well with the supports!
  18. greenrene

    greenrene Member

    That all is very interesting info, thank you so much! I was just wondering because husband and I were talking about difficult child the other day, and he seems to think that she will be living in our home for quite a while after age 18. Since she is 15 and only in 8th grade, she will still be in high school when she turns 18, but there is talk about sending her to a boarding school for high school (after she gets done with the TBS program that she is in). The general consensus is that our home is not the best place for difficult child to live for several reasons, one of which is the fact that all of her siblings are/are going to be so much younger than she is.

    Honestly, the thought of difficult child ever living in my home again fills me with dread. She has never been physically violent, but she is truly awful and unbearable. Hopefully the TBS will help her mature, but she has a LONG way to go. I'll need to look up the FL laws about adults with developmental issues. She definitely has them, even if her official diagnosis is only ADHD. She's 15, but functionally she's more like 8, and that's being generous.
  19. Winnielg

    Winnielg New Member

    I am sorry- what is a TBS? I understand the feeling of dread as my husband and I go thru that all the time. With this new plan I am looking forward to not having difficult child in house basically tormenting us everyday. I want to help him but he fights is every step of the way so maybe out if the house it will be easier to help him.

    I know in NYS one can stay in HS until they are 21 ( I think really until the day before their 22nd birthday). I know here there are residential boarding high schools that we considered as well.

    I think you should definitely be looking into FL stuff as ADHD is an official diagnosis, but more importantly if she will only be starting HS at 18 I would imagine she must be disabled in the eyes of the district which I think could only help you. But I would begin NOW. I wish I had begun years ago. I just did not know to start the process.

    Further you said she is more like 8. Have you had her adaptive behavior and or executive function skills tested? On difficult children psychological test we had done I know the main one was the BASC. I can pull the report if you want me to get more specific and PM you. But I would think results from that kind of test will shed light on either another diagnosis or rather just illustrate how she will need assistance in the future.
  20. StressedM0mma

    StressedM0mma Active Member

    TBS is a Therapeutic Boarding School. It is where I have wanted to send difficult child for awhile now, but costs are so high, I wonder how most families can afford it.