There is no shortage of opportunities for us to help create change in our world today. We all have our reasons for why we choose to support (or not) a particular issue. When it comes to advocacy, we are usually motivated by causes we identify with. If we can picture ourselves or our loved ones being affected by a certain problem, we’re more likely to invest our own time and energy to fix it. What about the issues that we don’t allow ourselves to connect with? Who fights to fix the problems most of us just don’t want to acknowledge?
Chambersburg, Pennsylvania is less than an hour’s drive from Frederick, Maryland – the place where Ethan Saylor was killed in January, 2013.
In Chambersburg, on September 9, 2010, another from our community was taken from his family.
His name was Timothy Smith.
Like Ethan, he died at the hands of someone whose job was to help.
Like Ethan, he died face down on the floor and restrained.
The manner of death was also ruled as homicide by asphyxiation.
Like Ethan’s sister Emma, Tim’s sister, Becki feared what her brother’s death meant to those of us left behind:
“What I want is for my brother’s death not to be in vain,” Boor said. “There has to be some sort of mandated training for these people.
“The important thing is it doesn’t happen to anybody else,” she said.
Unfortunately, Tim Smith’s death did not become public knowledge within the Down syndrome community like Ethan’s has.
It should have.
The discussion usually starts in IEP meetings when students start planning for “transition” from school to adult services.
The answer to that question may depend on the states involved.
The Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act
Am I Missing Something?
“The Arc Caddo-Bossier says it will not allow former Shreveport firefighter Billy Glass to perform community service or work with the intellectually disabled people the agency serves.”
“Billy Glass, a former Shreveport firefighter accused of abusing a mentally-disabled man at Fire Station No. 8, and of hiring a prostitute for another intellectually challenged man, pleaded guilty today to both charges.”
“Judge Ramona Emanuel sentenced him to 90 days of unsupervised probation on the misdemeanor prostitution count and one year of supervised probation on the felony cruelty charge. He must also pay a $25 fine, attend AIDS counseling, sensitivity training and work with intellectually disabled people.
Glass, 38, entered a so-called Alford plea, meaning he maintains his innocence but concedes the evidence in the case would reasonably result in a guilty verdict against him.”
“Federal and state officials are investigating three Shreveport firefighters who allegedly abused two middle-aged disabled men, got them drunk and watched as at least one of the men had sex with a woman.”
“The 50-year-old is accused of failing to report that an intellectually disabled man was being abused at Fire Station 8 and of trying to conceal the hiring of a prostitute for another mentally challenged man at the same fire station.”
In another article, it was reported that Glass would attend sensitivity training at the ARC. The district attorney is quoted there:
As a part of the deal, Judge Ramona Emanuel added her own requirement: Glass will enroll in a year of sensitivity training with The ARC of Caddo-Bossier, though The ARC has yet to confirm participation.
“The District Attorney’s Office not only has the obligation to uphold the law, but it also has an obligation to do so in a way that we think benefits the community,” assistant district attorney Dale Cox. “I think, in this case, it would benefit the community.”
“Now he can get on with his life,” Glass’ attorney Randal Fish said. “We thought that was a good outcome given the circumstances.”
Statewide, National, or NO Checks
The differences even reach down to the level of what types of jobs require pre-employment screening, what types of convictions disqualify someone, and whether or not a person can start working before the check is completed. (Disability Scoop – June 6, 2014)
Changes Coming (?)
- Medicaid.gov http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Quality-of-Care/Quality-of-Care-HCBS.html
- CMS.gov (Centers for Medicare and Medicaid Services) https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertificationGenInfo/BackgroundCheck.html
- NBCP FAQs https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertificationGenInfo/Downloads/backgroundcheckqanda.pdf
- Disability Scoop http://www.disabilityscoop.com/2014/06/06/background-checks-optional/19421/
- HHS Memo Jan 19 2012 http://oig.hhs.gov/oei/reports/oei-07-10-00421.pdf
- HHS Inspector General Memo May 29 2014 http://oig.hhs.gov/oei/reports/oei-07-14-00131.pdf
- FBI http://www.fbi.gov/about-us/cjis/cc/library/the-affordable-care-act-section-6201-1
Chart of State Regulations for Search Purposes
What Kinds of Checks are Required?
There’s a few very important things to remember while you’re reading this blog ~
1) All states have different rules.
2) Every family has to make their own decisions about what is best for them and their child.
3) I am not a lawyer nor do I profess to be one. I am also NOT someone you should take advice from without consulting the “real” professionals before making decisions that involve your loved one.
***For information regarding the laws in the state or country in which you live, you should contact your local agencies and/or an attorney.
In our state, until the person with a disability turns 22 years old, it is the responsibility of the early intervention provider, then the school systems to provide the necessary services, i.e. speech therapy, occupational therapy, physical therapy, social groups, etc. Josh never qualified for any services directly through DDS, until he turned 18 years old this past May and became a legal adult in the eyes of the state, then things started to change.
The school system notified the state (DDS) that Josh would be turning 18 in May of 2013. DDS contacted us and came out to the house to do an in-depth interview and I mean IN-DEPTH……a binder full of forms with questions after questions after questions about what Josh could and could not do. We also provided the state with all prior psychological testing, IQ testing, adaptive behavior testing that had been performed previously by the school system.
If you have a child in the school system, you know about these tests!! In our state, they perform a full battery of IQ and adaptive behavioral testing every three years (to prove that your kid still has a disability)…..as if the Down syndrome was magically going to disappear. These tests are VERY TOUGH, as a parent, to read through. ~~~ If you read my first blog and saw where I mentioned the rollercoaster ride…..these tests are the part where the rollercoaster is going really, really fast, downhill, takes a sudden turn where you almost get thrown from the car you’re riding in, then snaps your neck back in the other direction, only to throw you down another hill where you fall out, sit and cry and scream and cry and use swear words and THEN collect yourself, stand up, dust off, and say some more swear words directed at the people doing the tests about how they don’t know your kid and blah, blah, blah, blah. These tests are like a punch in the stomach kind of thing – you work your butts off for nearly three years, you got your kid talkin’ and walkin’ and making great strides (so you thought) and then someone comes in and compares your kid to what typical kids their same age are doing and the reports come back with words like *delayed *impaired *mild *moderate *severe *IQ *adaptive behaviors *and all these other things that make your jaw drop in disbelief. Tom and I honestly got to a point where we would read these reports, literally laugh out loud, then look at each other and says things like “hey, in case you didn’t know…….you’re kid is delayed!”
These “tests” are the absolute worst UNTIL……UNTIL you decide that they do not define your kid and you can turn the tables on the test givers! :) Sitting at an IEP meeting for Josh and his speech therapist suggests that the school system provide him with speech therapy (maybe) twice a week. We’re holding, in our hands, our trusty little TEST that THEY administered that says my kids speech is “severely delayed in expressive and receptive language skills!!!” Ummmmm, no I don’t think we will accept your offer for speech therapy twice a week, but we would like Josh to have speech therapy EVERY SINGLE DAY HE IS IN SCHOOL, FIVE DAYS A WEEK. What do you think they said to our request? That’s right. Every single day, five days a week, Josh would have one-on-one speech therapy for 30 minutes, 2 1/2 hours weekly, not 1 hour. That is how you take those tests and turn them around to benefit your child and HELP YOU to advocate for what you think your child needs.
We finally hear back from DDS that he has been approved for their services as an adult. We then went and applied for Social Security Disability Benefits. Josh never qualified for SSI prior to becoming “an adult” because his qualification was based on his parents’ income and we have always been a two-income household. Once he became an adult, we applied for Social Security and he was approved. If you are going to do this for your child/adult, be careful to watch timelines. The Social Security Administration only books appointments out 3 or so weeks and will only give you an appointment within the four weeks before your child turns 18. So be patient with the process. It does not move quickly. Luckily, we had a great interview and liked our SS coordinator very much.
Even though DDS has approved Josh for adult services, they do not play a role in any of his services until he turns 22. The school system/city is still responsible for whatever his program might look like. I am only in the very beginning stages of this part of Josh’s life, but I can already see a bunch of holes and gaps and places where he could fall through the cracks. *Another blog soon!
The Department of Developmental Services then began to guide us through the process of petitioning the probate court for guardianship. Now guardianship, as some of you may know, takes away your young adult’s rights. So this decision does not come without putting a lot of thought into it. We made our decision based on a few hypothetical situations and things we have seen in the news. We knew we wanted to protect him from financial and/or medical harm. We know that Josh is not capable of making appropriate decisions regarding his finances or his healthcare, so the decision for us was pretty simple. There are newer ways of doing things out there and I would encourage anyone reading this to look into all the different possibilities that exist. We simply chose to petition for guardianship.
DDS did EVERYTHING for us and we did nothing except follow a timeline. The first course of action was DDS “referring” us for a psychological evaluation which would include Josh being interviewed separately from us. This is called a CTR (Clinical Team Review). DDS made us an appointment, we showed up, two very lovely gentleman, one a psychiatrist and the other a social worker, brought Josh to their office for an independent interview, then Josh returned to the waiting room and it was time for mom and dad’s turn to be interviewed. From the time we walked in to the time we walked out…..30, maybe 45 minutes.
We met our DDS-appointed attorney at the courthouse. Our attorney, Josh, Tom and Tim stood in front of the judge. The attorney told the judge that mom was in the courtroom and she asked me to come and stand before her with my family. She asked Josh “who is this lady?” Josh replied, “this is the wonderful girl, Karen.” OR, in other words, mom! The judge laughed. She read through the paperwork, she asked Tom and Tim if they understood what their responsibilities would be, they replied yes, and she said petition granted. It was as simple as that. I’m sure this probate judge sees some absolutely crazy things in her courtroom and for a family to show up with all their T’s crossed and i’s dotted, with all family members present, with her ability to have a nice discussion with Josh, made her job very easy that day.
Now we have peace of mind that should anything medically happen to him, dad and Tim can seek appropriate medical care and we know that Josh cannot be taken advantage of regarding his finances. In our book, there was no other option and the choice was very easy for us to make.
So I think that’s it for now on the “becoming an adult” process and how local agencies play a much bigger role once a person with a disability reaches the age in which the world views them as an adult! Again, please feel free to contact me privately on our Facebook page. For those of you who know us, I’m always there checking in! :)
*Also, anyone who knows me well, knows to expect to find at least one typo on my writings. It’s just that the thoughts flow faster than the fingers. No need to correct them, unless it changes the context of the content. I know they’re there somewhere! :)
Yup folks, there it is, the 18 pages
Sure, “the state” mailed them to me postmarked Dec 12th, but you see, to get the full enjoyment from handling this paperwork, I find it best to procrastinate until the last possible moment and complete it in a panic, instead. Sigh.
For starters, every state is different. And as I understand it, perhaps even the districts within each state may have slightly different fingers around our…
It’s one of those things where, sure, I want someone to keep a close eye on anyone handling Marcus’ affairs. Except me – duh. Because clearly I can be trusted, so what’s the problem?
Are you catching any of this? Should I start at the beginning?
decision to prevent, heaven forbid, “the state” ever making the decision to appoint its own a guardian instead. Ward of the State does not have a good ring to it.
Nebraska keeps a very tight leash on folks who are guardians, particularly regarding finances. The most time consuming portion of the yearly required paper trail is completing the detailed, to-the-penny, account of Marcus’ incoming and outgoing monies. Now, until Sept of this year
Marcus had a part-time job. In addition to that, he gets a small stipend from SSI, enough to almost cover the cost
of his gym membership and music therapy, almost. So the good news is, the math isn’t hard – there’s not much to divvy up.
It’s mostly just annoying. Marcus clearly does not earn
or bring into our household enough money for anyone to run away with, even just for a good vacation. It’s obvious room, board, food and Broadway shows all come out of the general Sikora till. Yet I not only have to send accounting of every penny but all of his bank statements plus notarized documentation from his bank stating the information I am supplying is real.
All this so that I can keep the privilege of caring for my own son.
Which makes me extra sad. Because I know the reason for
this is there are bad folks out there, even with their own children, and that sucks.
The other thing is, Quinn and I both get a little paranoid when it comes to paperwork. We don’t love it. And so we think if we dot an i wrong, well, that’s it! Someone
swoops in and takes Marcus away. Our rational brains know that’s silly, but it doesn’t make the formal devil on our shoulder any easier to bear.
Last year was the first year I had to do the money part
of this packet of paperwork because it was Marcus’ first year of income. I did it wrong and received a summons.
SO, as is the custom, I then called an attorney who sat
with me and we went over every line to find where I went wrong. Plus he called the courthouse to be sure. He took my new and improved papers to the judge, and all was well.
Hopefully I get it right the first time this year.
I better get to work.
From what I’ve read (I’m no lawyer) the LOI is NOT a legally binding document, but it is a way for parents to let their wishes be known. It’s also a tool to help other caregivers understand your loved one’s habits and routines.
It’s important to create – and update.