Schools Now Take The Place of Mental Health Institutions
Transportation from Manhattan and Bronx for January 8 Vaccine Rights Rally in Albany

The Year Ahead

18 black balloonBy Cathy Jameson

It’s the sixth, and I’m finally ready to start January.  I’m aware the new month has already started, but it usually takes me a few days to get every appointment, every sports event and every outing listed on our big family wall calendar.  Once everything is on the calendar, I breathe a little sigh of relief.  Sometimes, I’m completely organized for the month ahead.  Other times, I’m far from it.  

Prepared or not, each time that I turn a calendar page over, I get a little excited.  I look at what we’ve accomplished in the last four weeks with a big smile.  We’ve done so much!  That’s a good feeling to have.  Wanting to keep the momentum, I look at what’s recorded for the next month’s activities and add anything new that’s popped up.  A different feeling come over me this time as I scan the page – Holy smokes! We have so much to do.  Putting it back on the wall where we can all see it, I walk away from the calendar hoping that I haven’t forgotten anyone or anything.  

My expectations are great.  They have to be.  There’s lots of us Jamesons living here in our home.  While we are one unit, each of us have our own things going on.  If I don’t carefully plan for what’s coming up, someone’s practice, game, or appointment could get forgotten.  Being forgotten is almost as bad as double booking myself, which I’ve accidentally done before.  So as not to make any mistakes, I also try to plan farther out than just the next four weeks.  I did that last week when I turned multiple calendar pages to add birthdays, anniversaries, six-month follow up visits and more through to the end of 2020.  I know I’ll be better prepared months down the road when I see the reminders I jotted down this week.  

Peeking at the rest of the year wasn’t a bad idea.  As I got closer to the final months, I knew that we’d have both a countdown and a count up ahead.  Ronan turns 18 this year.  18!  

T-minus 11 months to adulthood.  

T-plus(?) 11 months to guardianship.

Ronan’s birthday will certainly be joyous.  We’ll celebrate it by taking Ronan out to his favorite restaurant.  We’ll shower his with gifts and remember all the good that he’s brought to our lives.  Besides carrying on our old, standby traditions, if Ronan continues to need the care he needs today, his next birthday will include a new beginning—that little thing called guardianship.

I’ve yet to read everything there is to know about the transition Ronan, and we, will experience when he turns 18.  I’ve heard a lot, I’ve seen a lot of parents go through the process, but I still have much to do to prepare for it.  Petitions, trusts, and a care plan are top of the list.  Another list, this one of people to talk to, will also have resources of local and state agencies I’ll want to check out.  Several of the people on that list, including one whom I’ll get to speak to as early as tomorrow, are already very familiar with my son and his intensive needs.

These people are aware of the many supports he requires and have been generous with their time by showing me the ropes the last few years.  Their realm of expertise may not have include adult services, but I plan on keeping them connected as much as possible so that I can stay as informed as possible.  Being fully informed – in the past, that’s one thing that I didn’t always have on my side.  Being without it changed life drastically for us.  I didn’t know it during my early parenting years, but this quote is one I live by now and have said more times than I can count – had I known then what I know now, I would have made different choices than I did.  

I absolutely would.

So as not to leave any stone unturned, tomorrow, when my kids return to school, I’m going to read about the major changes ahead.  I’m going to ask questions.  I’m going to take notes and bookmark websites.  Every day until Ronan’s next birthday, I’ll keep reading and exploring what lies ahead because I want to be prepared as best I can be.  I would have loved to have tiptoed into the New Year a bit quieter, but I can’t.  Ronan’s future, because of his past, depends on me being the most organized I’ve ever had to be.  Hopefully, with all that I’ll learn, his future will come with new possibilities.  I’m always be hopeful for that.

Cathy Jameson is a Contributing Editor for Age of Autism.

 

Comments

cia

Sorry for the typos, I was using my new cell phone (my first), and it's awkward to type on. I meant pre-voc and representative payee. And SS.

Cia

Shelley and Jeanne,

When Cecily turned 18 almost two years ago, I opened a joint bank account in both her name and my name. That meets Ss requirements for direct deposit and for me to write and myself sign a check every month transferring all but a hundred dollars from her account to my account. The unpleasant woman we dealt with at SS said that SS maintained the right to check the balance in her account every month to see if it were less than two thousand. She said that if it were more, then that showed she didn’t really need the money, and her benefit could be reduced. Once at the beginning the state-paid speech therapist attended an IEP meeting at my request and I had C sign the check. I mentioned it to the SS rep and she got very upset, saying that C did not ever have the right to spend any money at all, that I, Ss the representative payer had the sole right to do so. Since we didn’t open an Able account, I don’t know what C would have had the power to do. I thought it was a deal-breaker that when the disabled person died, a lot or, probably, all of the money would go to the State. In most cases, the funds were given by the parents, who would always rather get the money back themselves to give to their other children or use themselves in their old age.

Last year, in C’s senior year, the high school had a joint program with the county family resource program, to bus some autistic students, including my daughter, to BCFR for a few hours every morning to do janitorial work there. Because that was the main area in which jobs were available. She did well, but didn’t really like it, so I told her to say she didn’t want to do it if it were proposed to her as a job site. The school didn’t offer any other voc training opportunities.

Now she’s in the ACT re-voc training program. I simply cannot provide her transportation to the other side of town, and she’s taking Paratransit. Two dollars in cash each way and it may come either an hour before or an hour after the scheduled time. It has been working out an hour and twenty minutes before the scheduled time in the morning. Pickup time to come home is four, but several times she hasn’t gotten home till nearly seven. But so far she doesn’t mind spending so much time just waiting. She likes feeling she’s moving toward independence.

cia

Shelley,

There may be problems using an ABLE account, as what is meant by "disability-related" expense hasn't been legally enumerated. http://cdrnys.org/blog/disability-dialogue/how-able-accounts-fail-disabled-people/

You might be unexpectedly audited and told you had misused funds. Yikes! And be in trouble with the IRS, SSI, and Medicaid. This is all in disarray, they have been blindsided by the surge in the disabled, mostly the autistic. I asked the guy we dealt with at the bank setting up the special needs trust if the legislature were going to try to take away the benefits of the third party special needs trust, but he didn't think they could. The money is never in the name of the disabled person, and it says all over the document that such and such only applies to the extent that it does not interfere with getting federal (and state) benefits. The bank's services and legal review were free of charge, I'd recommend parents buy the Nolo books and do it themselves rather than pay big bucks on a lawyer. I also went to a lawyer, who charged eight hundred for two hours and a very carelessly-written, short, incomplete document. I went with the Nolo form, typing it out myself, and it was much more complete and covered all the bases. I found the information on the spill-over provision myself researching online.

However, Medicaid demanded a copy of the trust in determining C's eligibility, and it took them just short of a year to determine that she was eligible despite the trust (which protected her interests, state be damned).

Of course a lot depends on finding responsible successor trustees, but that's always going to be the case when you're trying to provide for a disabled relative.

Jeanne J

Cia,

I live in a Maryland suburb of Washington DC. In my school district, almost all of the students who are going to receive a certificate of attendance attend school until they are 21. That pretty much includes anyone on the spectrum who is low or no verbal or who may be quite verbal, but are taking functional life classes instead of the typical curriculum class. I was so very grateful for my son having those last years, as he had a phenomenal teacher and team. They focused on vocational skills within school. He participated in weekly volunteer opportunities 3 times per week. He provided them with vocational units within the classroom, including data entry, assembly line-style tasks, and he would time my son on how long he could stay on task doing these independently before he needed to take a break. And because his teacher and his team were well trained on state-of-the-art autism instruction training, I didn't have to worry about the strategies used being inappropriate for him.

THAT IS THE DESASTER THAT I HAVE RUN INTO, NOW THAT HE IS IN AN ADULT DAY PROGRAM. Although he has had some very "nice" support people, our developmental disabilities agency (dda) pays these people minimum wage. Therefore, they are completely untrained in any strategies related to autism, are not required to be, and are payed too low for anyone who is trained to take the job. I have needed to instruct myself in all things dda, like doing all their webinars, attending all their information sessions, because these adult agencies and their staff have no idea how to take the training my son received and find an appropriate employment opportunity for a non-verbal autistic man. I reconnected him with one of his high school volunteer sights, so that he would not lose the skills he had developed. So, for me, my second do-over would be to try to find my son summer internships, instead of ESY, promoting the skills he was trained on in school, and establishing pre-transition potential employers, or at least a resume of actual employment opportunities. The BIG BIG LIE of no autism epidemic has left the adult programs thinking it is "business as usual" serving people with intellectual disabilities they have always worked with vs. designing day programs for adults with autism that have ANY usefulness - AT ALL!

Jeanne J

If there was one thing I could get as a do-over related to my son turning 18, it would be to get a bank account in his name, prior to him turning 18, but under my husband's and my bank account. Even as his representative payee with SSI, the government still needs to direct deposit the money into an account with the person's name who is receiving the benefits. Once they turn 18, many banking institutions require guardianship or power of attorney for the parents to manage the bank account. With power of attorney, institutions often ask whether or not your son or daughter understands what power of attorney means. So, if that is not your child, power of attorney is not accepted. But, getting that account before they turn 18 allows you to manage funds and move them around to different accounts, should you every get close to the $2000 limit. I would have just been able to check SSI off my list of things to focus on, and more time for the lengthy process of guardianship.

Shelley Tzorfas

The $ 2,000 limit is going away in every state. Look up "The Able Act" It allows for $14,000 per year. un $99,000 without losing benefits. You can use an "Able" account from a different state

Cia

Shelley,

I said several times at IEP meetings that the law provides for the autistic remaining in public school until 22. In reality, I was told by the staff who attended the meetings that they never did it. Only a few families who took it to court have been permitted to do that here. And I’d have to say What would be the f- point? They do not have one single, infinitesimal f- clue as to how to remediate the encephalitic vaccine brain damage which causes autism. The stroke-like damage to the language center of the brain is the most important deficit. They COULD set up classes employing several hours a day in ESL instruction. Only using the target words and phrases until they are mastered. Have several classes running concurrently so pre- schoolers or kindergartners who have mastered Hi, I’m Dylan, can move on to What’s your name? While those who haven’t can continue in different games and practice circles, animal puppets demonstrating the skill, Hi, I’m Leo. I’m Polly. Until they can do it too. It would have taken my daughter some time. The first time I took her to kindergarten she was a little feral child, escaping and running down the hall and farting into classrooms. It was some time before they located and corraled her. She had no ability at all to say Hi, I’m -. And they don’t teach them. One “expert” said her autism was due to a social anxiety problem. Another said she had heard English every day of her life, there was no way that she would be unable to understand, speak, and write English if she wanted to. And there you have it, the cause of the whole problem. Many people have a genetic predisposition to react to the incursion of vaccines with more than the necessary amount of inflammation, the inflammation often involves the language center of the brain, the way strokes do, and most development requires progressive building on language-based structures in the brain. You can repair the damage to some extent: every use of an appropriate language structure creates or reinforced a useful neural circuit. But at this time not many people are even able to entertain the thought that medical authorities and their colleagues in government and media could have screwed up to this degree, and then lie about it for decades hoping to put off the reckoning until their retirement.

I don’t think there’s any reason to try to keep the autistic in public school until 22 unless it’s just for babysitting. I guess I’d have to give the public schools here kudos for refusing to play the game. They have NOTHING to offer the autistic, and never did.

Cia

David,

I think your suggestions are too optimistic. In Missouri, as I said, funds for state- sponsored housing were slashed last July. My daughter wants to live esomewhere else, and couldn’t believe it when I told her that I could not pay for it. It would use up all our money in less than a year. She is low-verbal and considerably delayed developmentally, although she has made huge progress. I think the stare- sponsored programs may be successful in placing her in a job. However, Lukin tMurphy, the school district’s autism resource specialist, saidwhen he first came about six years ago, said that they had great success in employing the adult autistics, but last year when I asked about it at an IEP meeting, he said that the employment rate was very low. I think that indicated the discrepancy between what he was originally told and reality.

Here the Thompson Autism Center touts it’s year-long employment training program for the autistic, private pay and very expensive. I watched it’s promotional online video and was surprised that all of its students were very capable and verbally articulate. I would not have known they were on the spectrum. They only accept verbal Asperger’s students, but are always saying how much they help the autistic. They do not. I wrote here before about my daughter’s being in their pilot social skills program at her middle school. But because the students had to be much more verbal than she was, she failed in their inept program. Skill two. How to negotiate with your teacher for a better grade. Give me a break.

There’s also the Encircle program here, to teach the autistic different computer programs and place them in a job. I took my daughter to it’s typing (keyboarding) program two years ago. Expensive (but the county paid it), just a free online typing program. No idea how to instruct your ordinary low-verbal, developmentally-delayed autist. They were surprised that she wasn’t at all interested in competing with herself to increase her speed. And then I read that the Encircle programs were designed for high-functioning Aspies.

I don’t think anyone has seriously tried to count how many there are and the proportion of Aspies, low-verbal, delayed classic autists, and completely non-verbal, often incontinent low-functioning autists. Everyone says what promotes their agenda and it is in no one’s professional interest to do an accurate count. Mike Stevens (far from an objectively-accurate source) said that less than ten percent was employed full-time and was self-supporting, in other words the Aspies. Half were completely unemployed, that would include all of the lowest-functioning group and probably many from the classic group. Leaving forty percent employed part- time, which would include a wide range, everyone getting SSI plus many working from one hour a week to twenty-five.

Cia

I should also have said that state- sponsored housing takes about two- thirds of the SSI benefit as rent, leaving very little for food and anything else. So living at home is better in that aspect. By charging Fair Share I can only charge one-twelfth a month of half of our yearly property tax plus her share of utilities. Plus her share of groceries, and then I can spend anything left (nothing), on things to benefit her like books, clothes, swimming, and skating. I keep accounts, and spend well over $775 a month just on her.

Cia

I was in a hurry when I wrote my comment last night. I meant to include that I opened the CGP Third Party Special Needs Trust at our bank by putting a little over a thousand dollars in it to avoid monthly fees. Not enough to generate interest which would require paying tax on it (and income tax on special needs trusts is extremely high, something I think the laws will change on with the explosion of autism; the Nolo book I recommended has advice on taking money from it from the interest rather than the principal to minimize taxes; I’m just going to leave it alone and my successor trustee will have to deal with it after I die.) But it’s now operative and will receive all my property when I die. Including title to our house. I’m going to add a clause saying that the trustee should rent the house to someone; it would bring in over a thousand dollars a month in rent, which the trustee could spend in ways that benefit my daughter. It wouldn’t be in her name, so wouldn’t jeopardize her SSI and Medicaid benefits. She can’t ever have over two thousand dollars in her bank account. Our SSI rep said that by design SSI keeps recipients below the poverty line. Just this past July the legislature slashed funds available for state-sponsored housing because of what they call an unexpected explosion in autism. In other words, they can’t deny the numbers anymore as they had been doing. Our county rep said last week that they need eighty million to meet the demand, but have been slashed to seventeen. My daughter was sobbing in disappointment, but she said they can only place five a month now of the most desperate cases. She did a needs-based evaluation two months ago. 12 means the most urgent need, but they gave C an 11. So she’s on a waiting list. Erynn said that my MS meant that we were on the cusp of a crisis situation and it would be better to place C sooner rather than later. But she only got an 11.

She’s in a pre-employment program now, doing great, just stocking and shelving at the Food Bank and Food Pantry now, orientation at the Humane Society later this month. Probably move into Voc Rehab in March. The pre-employment skills training program calculated that she could work five hours a day at minimum wage and get $1,200 a month without losing much, if anything, in SSI benefits. Erynn said last week that her supervisor at the Food Bank said she was such a great worker that they wouldn’t let her go, but we’re going to keep her!

This is an interesting situation

Cia

In most cases you would get SSI and Medicaid at 18. And then the parent assumes responsibility for insuring that the young autistic adult’s money is spent appropriately. You have to choose between charging them rent or having them pay their fair share of expenses (we’re doing the latter). $775 a month. You keep all receipts for groceries and other expenses like clothing and recreation. I used a Nolo book from Amazon to use their forms to draw up a third-person special needs trust. Not a first-person or Able trust: then the state will ultimately take back everything it ever gave in Medicaid. And the person can only spend Able money on disability-related expenses. My daughter is her own guardian, one advantage is that she would not give her consent to any vaccine, and has a bracelet engraved with her name that says I do not give my consent to any vaccine. I used another Nolo form to write a will leaving all my property to the third party special needs trust so that the trustee has to spend it in ways that benefit my daughter, but it’s never in her name and the state can never get any of it. I included a spill-over clause in my will so that any of my property not specified still goes to the trust. We had our bank review and approve it and they have a copy. My daughter signed both legal and medical powers of attorney with me listed first as having the power to make decisions if she were not able to make them for herself. I think that’s satisfactory. It’s expensive and complicated to request guardianship and you have to forever submit paperwork and cooperate with an annual review.

Shelley Tzorfas

Unless your area is different you do. not have to accept a High School Certificate and you have the right to a public education until he reaches age 22.

Marianna

Bill,

I just recently read something somewhere about Yang. Apparently he talked about Neurodiversity concepts such as autism being the “new normal”, etc. I wouldn’t assume that Yang is supportive of our point of view here just because he has an affected son. He may be like that researcher who wrote the book “Vaccines Did Not Cause Rachel’s Autism”.

Marianna

Cathy Jameson

Thank you, David L! This is great info to have.
Cathy

Bill

As far as I know, Andrew Yang is the ONLY Presidential Candidate with a son with autism....
With an Andrew Yang White House in Nov., I'd say things will be looking GOOD for the Autism Community....
I wonder what the other candidates say about all the autistic children we're seeing....????....

David L

Individuals on the spectrum display great differences in decision-making capability. But regardless of their personal capacity, when they reach the age of 18 (19 or 21 in some states), they are legally recognized as adults. That means that, unless legal action is taken, parents will no longer be able to make decisions on their behalf regarding medical care, finances, education and other important matters. The goal, of course, is to minimize any interference with someone’s independence, while ensuring their health, safety, and protection from exploitation. If your family member needs at least some assistance, there are various legal approaches to consider.

• Full guardianship – Requires a court evaluation and transfers full responsibility for medical, financial, residential and many personal care decisions to another party. In some states, financial authority must be invested in a conservator, who may be the same individual as the guardian.
• Limited guardianship– Restricts the guardian’s responsibilities. The guardian might, for instance, be charged with making choices that relate to healthcare and housing, with the ward retaining all other decision-making capability. Requires court appointment.
• Healthcare proxy – Names an agent empowered to make medical decisions on the individual’s behalf. No court intervention is required, and the agreement can be dissolved at any time.
• Financial power of attorney -Without relinquishing control over personal finances, an individual grants an agent decision-making authority for the purpose of assisting in financial management. No court action required.
• Educational Power of Attorney – Authorizes another party to have access to the individual’s educational records and to make decisions concerning Individualized Education Plans (IEPs) and post-high school education. No court action needed.
To locate a special needs attorney who can assist you in considering options http://specialneedsalliance.org/locate-an-attorney
Source: https://www.autism-society.org/living-with-autism/future-planning/guardianship-and-alternatives/

The problem of ‘aging out’ of services is a real hurdle every parent or caretaker of a child with autism inevitably faces, Adults with autism continue to need their services. The Autism CARES Act which was recently passed into law recognizes that and ensures that the federal government continues to help hundreds of thousands of parents by funding research and support programs. It provides $1.8 billion in funding for autism programs over the next 5 years at the Centers for Disease Control and Prevention, National Institutes of Health and Health Resources and Services Administration. The new legislation will reauthorize vital federal research on earlier interventions for children with autism and expands funding for critical research, education, housing and other programs that assist the countless children and adults on the spectrum, and their families,” Smith said in a statement. “The bill will also help ensure that the estimated 50,000 persons with autism each year who ‘age out’ of critical assistance programs after the age of 21 and enter adulthood are supported, as many individuals and communities are unprepared for this transition. The Autism CARES act will have additional funding that will add more job coaches, housing, and counseling. So cathy, maybe something in there will help you as you get to that point or others. “Every year 50,000 young people who become adults are on the spectrum, and they’re going to need jobs, education, housing,” Smith said. “We’re going to try to make sure nobody is left behind,”
https://www.northjersey.com/story/news/new-jersey/2019/09/30/autism-cares-act-signed-into-law/3825728002/
https://nebraska.tv/news/local/autism-cares-act-adds-lifetime-support-for-families-and-children
https://www.autismnj.org/news/autism-cares-act-becomes-law/

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