Category Archives: Aging

Health in Adults who have Down syndrome – 5 Areas of Concern

Research summary by Stephanie Holland

Lack of yearly physical exams / limited access to care:

Research suggests (1) that primary care physicians may be able to respond to complaints, but may not be completing much needed preventative medicine options.  Some doctors are unwilling to accept Medicaid patients, or patients they perceive as complicated (requiring more time / resources). They may feel inadequately trained to accept patients with intellectual and developmental disabilities.

Lack of emotional support:

Often people with developmental disabilities are surrounded by paid caregivers.  One study found “A full 24.0% of these adults reportedly had no one to talk to about personal things or often felt lonely, a significantly higher rate than in the No Disability group.” (2)  “The most common forms of stress reported in these studies include: hearing people argue, death or serious illness of someone close, constantly being interrupted, and not being quick enough. Interestingly, interpersonal stress seems to be most common. This may be because people with ID typically have limited control over who they are with and have limited ability to escape or end negative social interactions.” (3) Depression and behavior changes can result and impact overall health.

Dental disease:

“People with ID have poorer oral hygiene and higher prevalence and greater severity of periodontal disease. Caries rates in people with ID are the same as or lower than the general population. However, the rates of untreated caries are consistently higher in people with ID. Two subgroups at especially high risk for oral health problems are people with Down syndrome and people unable to cooperate for routine dental care.” (4) Many patients with intellectual disabilities rely on Medicaid, which does not offer adult dental coverage. Dental disease can contribute to a variety of other health issues.

Early onset Alzheimer’s disease and dementia:

People with Down syndrome are prone to early ageing and Alzheimer’s disease. Personality and behavioral changes, and a decrease in cognitive and language ability are indicators of the disease. (5)  There is a tendency for providers and caregivers to overlook other issues that may present as a decline in functioning. (6)  Other factors, including sleep issues, sensory and musculoskeletal impairments, and depression (7) need to be ruled out.

Age Related Comorbidity:

There is a higher probability that adults with Down syndrome will develop visual and hearing impairments, epilepsy, thyroid disorders, and dementia.  Osteoporosis, obesity, diabetes, poor dental health, and the effects of taking several medications for a long period of time also diminish overall health. (8)


(1) Lunsky, Yona, et al. “Periodic health examinations for adults with developmental disabilities Are we doing enough?.” Canadian Family Physician 60.2 (2014): 109-110.

(2) Havercamp, Susan M., Donna Scandlin, and Marcia Roth. “Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina.” Public Health Reports 119.4 (2004): 418.

(3) Lunsky, Yona. “The impact of stress and social support on the mental health of individuals with intellectual disabilities.” salud pública de méxico 50 (2008): s151-s153.

(4) Anders, Patrick L., and Elaine L. Davis. “Oral health of patients with intellectual disabilities: a systematic review.” Special Care in Dentistry 30.3 (2010): 110-117.

(5) Määttä, T., et al. “Adaptive Behaviour Change and Health in Adults with Down Syndrome: A Prospective Clinical Follow-Up Study.” (2014).

(6) Torr, Jennifer, et al. “Aging in Down syndrome: Morbidity and mortality.” Journal of Policy and Practice in Intellectual Disabilities 7.1 (2010): 70-81.

(7). Wark, Stuart, Rafat Hussain, and Trevor Parmenter. “Down syndrome and dementia Is depression a confounder for accurate diagnosis and treatment?.” Journal of Intellectual Disabilities (2014): 1744629514552152.

(8) Glasson, E. J., D. E. Dye, and A. H. Bittles. “The triple challenges associated with age‐related comorbidities in Down syndrome.” Journal of Intellectual Disability Research 58.4 (2014): 393-398.

Issue Monday – Aging with Down Syndrome

By Stephanie Holland *Revised 10/13/15

One of the reasons we decided to create a separate community was our realization that parents and caregivers of adults have specific needs for information.  We’re past the stage of schools and education.  We’re lucky to be living in a time when the life expectancy of people who have Down syndrome has doubled since our children were born.  While this is wonderful news, it also presents unique needs for information and care giving.  The problem is that some of this information is not readily available, and some may not even be written yet.

We need to create some of this knowledge by sharing our experiences with each other and learning as we go.


Aging with Down syndrome on The Road We've Shared

Photo credit: Down syndrome New South Wales

One of the first issues we tackled here on The Road was that of legal guardianship of adults who have an intellectual disability.  In the past, it was assumed that all parents would petition the courts and receive guardianship of their children once they reached 18.  There are many reasons this was the norm, and it was thought that it was the only way to keep our loved once safe from being taken advantage of.  Today, the laws are changing and different options that allow parents specific control over things like medical decision making and finances can be pursued without taking away all of an individual’s civil rights.  Each family needs to make their own decision as to which avenue to take.  We at The Road are always looking for information that we can share and ways we can discuss the pro’s and con’s together. A webinar about guardianship and options to it is in the works so stay tuned.

Some of our posts on the issue include:
Becoming an adult in the eyes of the law ~~~ By Karen Gregoire- 1/4/14
The joys of guardianship paperwork – By Mardra Sikora – 1/15/14
Oncoming traffic – By Mardra Sikora – 1/23/14
And the archived version of our very first “radio show” that was a two-hour conversation on guardianship.

You can find several resources on the subject of planning, including our list of Guardianship Information By State, and some “Special Needs Planning Resources” on our “Resources” page.

Life Expectancy for people with Down syndrome has increased dramatically in recent decades

 * While these statistics are encouraging, we have since discovered that they only apply to Caucasians. For people of color, the increase is not as dramatic and the life expectancy is about 1/2 of what is being reported.
Racial disparities in Down syndrome

For more information on racial disparities in the Down syndrome community, see our posts on that topic.

Medical Issues

People who have Down syndrome have many of the same health issues as the rest of us.  The aging process can start earlier and progress more rapidly though.

We’ve collected a list of adult Down syndrome medical clinics and follow all of the news on the link between Alzheimer’s and Ds.

In November, we’ll be focusing on health concerns for aging adults.

Until then, you may want to check out the NDSS page on “Aging Matters” here.

Creating History

As a community, we can reach out and share our stories, helping caregivers deal with current events in our lives and creating resources for future generations.  We’re in a unique place and our voices can help others.  We hope you’ll join us and feel free to let us know how we can help you and your family navigate the glorious stage of adulthood.

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!  :) 

Joey Makes People Smile

Meet Joey – through the Eyes of His Sister, Marianne

Joey LOVES people…he can break the ice better than I can.  It is his smile and hugs that melt all those around him.  He loves his house mates and shows it by always thinking of them while he is out and picking up papers for them.  Then when we do a book signing he just has a blast!  He especially loves to great the babies and children and of course the pretty girls! 

All they need to see is his smile and they walk on over.  His love for people also includes the guys at the barbershop.  He recently started going back due to the efforts of the group home manager.  For that I am super grateful!  Joey loves being with the “guys”!  He walks in the doors to the shop and says “HI!”  Hand up in the air and huge smile on his face and all at once they say HI back. 

When Joey had his 50th birthday we had a big party for him and invited the “guys”…All 4 came and bought him a drink to which he sipped and replied “yuck” with a priceless face!  It made me cry to see. Wow this is what is was all about, Friendship!  And now the clients who get haircuts ask about him when he is not there.  It is his place…no staff or family go with him – he is on his own working, making money and playing around with his co-workers.  They love him and help teach him valuable lessons and accept him for who he is!  

I couldn’t be more happy.  Joey’s skills have grown and the business is better for it as well as his co-workers.  WIN WIN all the way around.  Don’t ever let someone tell you that just because your loved one is older that they can’t learn or do new things or adjust to new circumstances.  Joey still surprises us today and for that I am grateful beyond measure.