Category Archives: Legal Issues

NCCJD – Advocating For Justice in the Intellectual Disability Community

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?

Continue reading NCCJD – Advocating For Justice in the Intellectual Disability Community

Timothy Smith and Ethan Saylor – 2 Deaths by Prone Restraint

Timothy Smith Ethan Saylor





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.

Continue reading Timothy Smith and Ethan Saylor – 2 Deaths by Prone Restraint

Is Guardianship Right for Your Family?

PictureGuardianship is one of the biggest issues that parents of children who have intellectual or developmental disabilities (ID/DD) face.

The discussion usually starts in IEP meetings when students start planning for “transition” from school to adult services.

For a long time, guardianship was considered the only way to keep individuals with ID/DD “safe.” Now, there are other options such as limited guardianship or powers of attorney.  But how do families make the decision about what is best for their family?

Continue reading Is Guardianship Right for Your Family?

Guardianship Tips – What Happens When You Move?

So, you’ve gone through the process of getting guardianship of your adult child.  What happens if your family moves out of state ?

The answer to that question may depend on the states involved.


The Uniform Adult Guardianship and Protective  Proceedings Jurisdiction Act

Continue reading Guardianship Tips – What Happens When You Move?

Can We Talk? – “Consent”

Red handsA criminal case in Iowa may have implications for the romantic relationships of adults who have Down syndrome.  It’s a difficult topic, but one that deserves some discussion.
78-year-old Henry Rayhons is facing third-degree sexual abuse charges for having relations with his wife who was living in a nursing home.  The question is, since his wife had Alzheimer’s disease, was she able to consent to a physical relationship?
Henry and Donna Rayhons

Photo from
Headlines like “Can a Wife With Dementia Say Yes to Sex?” are showing up everywhere as legal minds discuss the issue of whether people who are deemed mentally incapacitated actually have control over their own sex life.

Continue reading Can We Talk? – “Consent”

Crime and Punishment in the Intellectual Disability Community

Am I Missing Something?

Man abuses someone who has an intellectual disability and as his punishment, judge orders him to work with the ARC.


Billy Glass (Photo: CPSO)
I came across an article today in the Shreveport Times that explained:

“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.”

As I read the article, I learned that several former firefighters were involved in incidents at the firehouse.

“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.”

What I can’t wrap my head around is the punishment that the judge thought was appropriate:

“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.”

As a mother, I fell this is absurd.  I cannot fathom why anyone would think having these men work around more vulnerable adults is a good idea.

“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.”

As it is, we are currently fighting to get consistency when it comes to criminal background checks for people who work as care providers.  WHY then would we “sentence” known abusers to perform “community service” with our loved ones?!
On top of the abuse, there was an apparent attempt to cover up the scandal.  The chief and assistant chief were fired for violation of administration policies.

“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.”

Parents in Shreveport must be furious and alarmed.  The rest of us should be too.

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.”

A good outcome for who?

Keeping our Loved Ones Safe – Background Checks for Personal Care Workers

Like many services that families of people with disabilities depend on, regulations regarding background checks are set by the individual states.  Unsuspecting families may be told that all workers must pass a “background check” but depending on where you live, that could mean a host of different things.  The figure below from a recent government study shows the variety of state policies.
HHA Background Check Requirements by State

State Requirements for Conducting Background Checks on Home Health Agency Employees, OEI-07-14-00131

Statewide, National, or NO Checks

According to the data, 10 states don’t require any background checks at all while the remaining states have a mixture of statewide checks and national (FBI) screening.  Tennessee seems to be in a class by itself, requiring only a registry check.

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 (?)

It’s not clear, to me at least, whether the studies currently being conducted will result in changes being mandated across the board.  Is the “nationwide” program something each state must volunteer to enact (and/or pay for), or will federal guidelines be tied to Medicare/Medicaid money only and not apply to the private sector?  I’ve only just begun my research on this issue, but already I have many questions.  Ultimately, this is a safety issue for all families utilizing health care providers either within a residential setting, or in the home.

More Information:

If you’d like to do some of your own research, these are the sites/documents that I’ve found helpful so far:


Chart of State Regulations for Search Purposes

If you want to see what your specific state law says:

What Kinds of Checks are Required?

This chart shows whether background checks (where required) must be complete before work begins and if follow up checks are required.

Becoming an adult in the eyes of the law ~~~

Originally posted 01/04/14 by Just Joshin’ Ya’s Mom – Karen Gregoire

Just Joshin' Ya

Josh with his brand new, court-appointed guardians, big brother Tim and Dad!

Do you have a child with an intellectual disability or developmental delay?  Have you thought long and hard about whether or not to apply for guardianship of your son or daughter once they turn 18?  So did we!  Here is the process we worked our way through with Josh.  

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.

With that said, we live in Massachusetts.  In Massachusetts, when you have a child with a disability, whether determined at birth or afterwards, your child is eventually connected with the Department of Developmental Services (the new name for the old Department of Mental Retardation), since it seems we can no longer use the word retarded or retardation ~ *another blog entirely*.  Since Josh is 18 years old and my memory is that of a 40-something year old woman, I don’t even recall how we initially got involved/connected with DMR – sorry DDS (old habits die hard), but I know he was registered (maybe once we began receiving Early Intervention services) as a person who would eventually need the services of the Department of Developmental Services.  

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)… 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.  

Just Joshin' Ya

Josh set off the metal detector as we walked into the courthouse. As the guard approached him with the “wand”, Josh did a ‘spread um’ sort of move….even the guard was cracking up!

The CTR report gets sent back to DDS, DDS calls us and says the recommendation is clear that guardianship would be beneficial.  We then waited to hear.  They called us with a date to appear in court.  ALL OF THIS IS FREE OF CHARGE.  You can hire your own attorney, but it is our understanding that things will not move any more swiftly by paying a private attorney.  We just had our court date on 12/16/13.  We made the decision that dad, Tom and big brother, Tim, would petition the court to be Josh’s guardian and I, mom, would apply to be Josh’s Adult Family Care Provider (more info below).  

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.

Just Joshin' Ya

Waiting in court for our judge to come and for our hearing to begin!

As for the Adult Family Care Provider stuff mentioned above, this is a program run by our state and I know many other states offer a very similar program.  It used to be referred to as an Adult Foster Care program.  When a person with a disability becomes a legal adult and is unable to take care of themselves from an “activities of daily living” point of view, someone has to care for them.  In an attempt to keep people with disabilities in their communities and out of placement in group homes, nursing homes, or institutions of any sort, the program will pay a family member to render care and I have very recently been approved to be Josh’s Adult Family Care provider.  If anyone has specific questions about this program, you can private message me on our Facebook page and I will try to help you with this.  However, we were also guided through this entire process by the Department of Developmental Services.  

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!  :) 

The joys of guardianship paperwork

Originally posted by Mardra of Grown Ups & Downs 1/15/2014

Yup folks, there it is, the 18 pages

I have to complete within the next week.
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?


Quinn and I are Marcus’ legal guardians. We made this
  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. 

Letter of Intent

Legal issues on The Road We've Shared
Since this month’s topic is legal issues, I wanted to start looking at what I’ve heard experts say is the most important “first step” in planning for the future – the Letter of Intent (LOI).

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.

Continue reading Letter of Intent