Category Archives: Health

Why we need more research! #RaceAndDownsyndrome

The following is a list of excerpts from

Health and Health Care Disparities Among People with Disabilities

Disability Rights Education & Defense Fund 

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  • “While disability affects people of all races, ethnicities, genders, languages, sexual orientations, and gender identities, this does not mean that impairment occurs uniformly among racial and ethnic groups.”
  • “It is vitally important to distinguish between disability as a natural part of the human condition, and disability-related health disparities that can lead to compromised care, ill health, institutionalization, and premature death. These are not consequences that inevitably follow the simple fact of impairment.”
  • “In short, the relationship between race and disability is a complex one that needs to be freshly viewed as race and disability together may have a previously unaccounted cumulative impact on creating health disparities.”
  • “PWD and members of racial minorities often share socio-economic characteristics and related health access barriers due to the expense of maintaining health with a disability. PWD are much more likely to experience various forms of material hardship— including food insecurity, not getting needed medical or dental care, and not being able to pay rent, mortgage, and utility bills—than people without disabilities, even after controlling for income and other characteristics.”
  • “The importance of appropriately disaggregated data is also raised because the nonhomogenous categories “people with disabilities” and “racial and ethnic minorities” experience different, and often surprising, specific health disparities.”
  • “People with developmental disabilities are often assumed to have greater access to care as a population that presumably visits care providers all the time, and yet this population experiences high rates of preventable health conditions such as fractures, skin conditions, obesity, poor oral health, and vision, hearing, and mental health problems. A multinational study of 16,000 adults in 12 countries, found that 68 percent falsely believe that people with intellectual disabilities had the same or better health care as the general population.”
  • “It cannot be assumed that because PWD of color may need more health care services, they actually get that health care easily, or that they receive appropriate health care, especially when additional factors such as coverage limitations, physical inaccessibility and lack of policy modification, and stereotypes are at play. PWD of color or who are members of other minority groups are very likely to be encountering instances and forms of “double discrimination” that no single movement is effectively identifying or actively working to address.”
  • “While the correlations above are clear, the extent of the connections, the direction of any causative links, and the impact of multiple systemic health barriers in the lives of PWD of color are unknown because little data respecting the interaction of race and disability has been collected and/or analyzed with those connections in mind.”
  • The disability and racial minority communities cannot accurately understand how to tackle these myriad barriers and disparities without much more information on how disability and minority cultures and stereotypes, as well as additional variables such as socio-economic status, sexual orientation, and gender coalesce around health and illness.”

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.

The Intersection of Awareness and Health Concerns for Adults who have Down syndrome

As we say goodbye to Down syndrome Awareness Month, I’d like to personally thank all those who participated and helped us with our efforts!   We managed to finish strong on the 21 for 31 blog challenge and we had so many great photos! 

While sharing stories and pictures was fun, we also started on a mission of greater importance:  spreading awareness of health disparities within our own community.  Thanks to Global Down Syndrome Foundation’s national spokesperson, Beverly Johnson, the huge difference in life expectancy for people of color who have Down syndrome and Caucasian people with Ds was reported in mainstream media.  

 ”There’s a remarkable disparity between children of color who get Down syndrome — life expectancy is age 23 — and non-black children with Down syndrome — life expectancy is 63 years old,” 

We are so grateful that someone with her star power spoke out on this issue.  In response, we created a petition to try to get advocates and families to help us ask the national Down syndrome groups to spend more time and resources on this issue.  Within days, we heard from 3 of the 4 groups petitioned, and we’ve started a dialogue around this issue.

More Research is Needed

“Non-Hispanic black children with Down syndrome were twice as likely to die during childhood and adolescence compared to Non-Hispanic white children with Down syndrome.”  (Dec. 2012)

It’s a huge problem and their aren’t any easy answers.  We look forward to continuing our conversations with the doctors, researchers, and our national advocates, while we search for ways to address this important issue that has been ignored for too long. 

Alone we can do so little; together we can do so much.

Helen Keller

Adult Health Issues Month

During the month of November we’ll be looking at specific health concerns for adults who have Down syndrome.  According to the research, those include visual and hearing impairment, epilepsy, thyroid disorders, osteoporosis, obesity, diabetes, and poor dental health.   Other areas of concern are a lack of physical activity and the affects of taking multiple medications for many years.
Join us for more discussion on these issues and information about National Family Caregiver’s Month in the coming weeks.

Understanding Habit Changing

What are your habits?
You may immediately think of some negative habits. Things no one is proud of or are downright rude.  Like, biting fingernails, cutting people off mid-sentence, or checking our phones ad nauseam?  

The thing is, I bet that you have some pretty great habits as well. Like, kissing your significant other when you leave in the morning, brushing your teeth at least twice a day, and putting your car keys in the same place when you get home. These are all simple and good habits.  

Why is this important?

Habits are our behavioral autopilot. If you are unsatisfied with the state of your overall health, it is often a result of your habits, or at least can be improved with new habits.

It is important to understand that your old habits don’t make you a bad person, but still realize that in order to achieve your wellness goals, old habits must change. After all, it’s those very habits got us into this mess, or are keeping us from improving.

Change is not easy.

Jonathan Haidt identifies two halves of the human mind in his book, The Happiness Hypothesis. He labels these the Rider and the Elephant. The Rider represents the rational, analytical mind and the Elephant the emotional side. These two guys are traveling together but often disagree and get lost. For example, the Rider can get bogged down in analyzing and overthinking becoming paralyzed while the Elephant is skittish and lazy and looks for the easy way out. The Elephant is strong enough to pull the wheel-spinning Rider along. An emotional and mental tug of war that keeps us mired in our old habits.

But there is hope!

In their excellent book, Switch, Chip and Dan Heath discuss that for lasting change to occur you have to appeal to both sides of the brain to get them working together. You do this by directing the Rider and motivating the Elephant. The Rider has his weaknesses but is also a planner that can plot a course for a better future. You just have to provide the right plan. The Elephant is strong and when spurred on by the correct emotions is a great ally. Here are a few of their suggestions:

Direct the Rider

  • Find the bright spots. Ask yourself this question, “What’s working and how can I do more of it?” Odds are you are doing some things right. Maybe you always take the stairs at work instead of the elevator. Great! Don’t get bogged down thinking that the activity isn’t strenuous enough. Keep doing it and look for other opportunities to include similar things.

  • Script the critical moves. Ambiguity is the Rider’s enemy. Too many choices lead to “paralysis by over analysis” so to drive real change take out the guesswork. “I will only eat starchy carbohydrates for breakfast or immediately following an intense workout.”

Motivate the Elephant

  • Find the feeling. It is always easier being negative than positive. We tend to be wired for it. If you have begun to eat more healthfully and/or exercising you probably have begun to feel better. Maybe you have even lost a few pounds. Awesome! You should feel proud of your accomplishment and realize more is on the way. Don’t let negative thoughts creep in and disrupt your progress but instead hold on to the positive feelings to keep you moving forward. Remember, your old habits took years to get you where you are and it won’t turn around in a day, week or month.

  • Shrink the change. People find it very motivating to be partly finished with a longer journey because they may realize they are closer to the final destination than they might have thought. “You wanted to lose twenty pounds and have already lost five! All you did was give up soda and increase your lunch hour walk. Think of where you will be in another month if you keep it up!” This sense of progress is critical to keep the easily derailed Elephant on track.

Putting it in practice

Change is difficult so don’t take on too much too soon. Begin by focusing on improving one old habit or creating one new one. Make this change stick for three weeks before taking on another habit change. Research shows habits are formed by 21 days of consistent behavior but be aware that your old habits are easy to slip back into if you are not careful.

If you have any questions please visit us at



***Join us for a 321 ELearning workshop, “Creating Healthy Habits with The Ones You Love” Mardra Sikora and Stephanie Holland from The Road We’ve Shared discuss Creating Healthy Habits with The Ones You Love. Special guest Brad Dienstbier M.A., NSCA-CPT, and owner/fitness director from the Bodysmith ( will talk about how incorporate healthy habits into your daily routine. We’ll also cover tips for “caring for the caregiver” – making sure that you are at your best so that you can support your loved one.

2 hour session – 90 minutes in content and 30 minutes Q&A /sharing session.

Seats limited to 200.

Price: $15.00 USD per registrant. Reserve your space here.

Healthy Living Month – Take Care of YOU!

Yes! You ARE a Caregiver!

August is healthy living month on The Road and as we focus on ways to keep our loved ones active and healthy, we can’t forget that we also need to take care of ourselves.  
As parents, we tend to think of what we do as natural or no big deal.  We’ve been conditioned to think that by placing a caregiver label on ourselves we somehow diminish our child.  We don’t want to admit that our adult children could cause us stress.  We love them!  We’re used to taking care of them and we wouldn’t have it any other way.
A recent New York Times article talked about the facts of caring for an adult child with an intellectual / developmental disability:

“Other 21-year-olds move out and take jobs, but most of these children stay at home,” said Dr. Dykens, the director of the Vanderbilt Kennedy Center. “You have aging parents and aging offspring. You are each other’s for life.”

Our situation is different from other parents. 

“Having a child that has a disability, it’s all-encompassing,” he added. “You could see how people would lose themselves.”

By the time our children reach adulthood many of us define ourselves first and foremost as a parent.  I’m “Josh’s Mom” above all else.  It’s a statement of pride, but it’s also an indication of my position as lifelong caregiver.   

Taking Care of You

We have to make sure that we are as healthy as possible …

so that we can provide the best care for our children.

It’s not a flaw to admit you could use some some help or to learn some techniques for dealing with stress.

All parents endure stress, but studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future — all of it can be overwhelming.


There are lots of resources available for caregivers.  During the month of August we’ll be looking for and sharing things that other parents have found helpful.  

One place to start is the Caregiver Action Network.  They have a resources page that you might find helpful.

BlogTalk Radio also has a category for “Caregiving” if you’d rather listen to discussions than read.

Please feel free to comment on this article if you have any suggestions for other resources.  If you’d like to share your story, please email us!  

*Remember – the flight attendants always say, put your oxygen on first, before you try to help someone else…     

Depression in Adults who have Down syndrome

As someone who has battled with depression, the thought of it attacking my otherwise joyful son is not something I want to even consider.  However, the science shows that it is possible, and maybe even a bit more likely, so I decided to attend the 321 eConference on Depressioin People with Down Syndrome to find out what I should know and be looking for.

Ruth C. Brown, Ph.D.

The presenter is a postdoctoral fellow at the Virginia Institute for Psychiatric and Behavioral Genetics at Virginia Commonwealth University.  Her primary research interest is in designing developmentally appropriate assessments of depression and anxiety in individuals with Down syndrome and other intellectual and developmental disabilities.

Risks for People who have Down syndrome

One of my main questions going in to the session was why, when the stereotypes tell us that people who have Down syndrome are “extraordinarily happy” is it thought that we need to worry about depression?

Dr. Brown talked about the increased risk for adults vs. children and gave several reasons why this might be true;

  • Social exclusion
  • Maltreatment
  • Limited occupational opportunities / independence
  • Decreased problem solving skills

Periods of high risk

  • Negative stress – death, injury, divorce
  • Life transitions – moving, new schools

In her presentation, Dr. Brown also talked about what signs to look for and treatment options that are available.  

Another aspect of depression in our community is the difficulty in diagnosing the disorder.  There are several factors that make traditional methods harder to use including limited speech and the possibility that depression could be a symptom of other issues like Alzheimer’s, thyroid issues, or sleep problems. 

Overall, the session was very informative and it got me really thinking about what I need to do to make sure this doesn’t become a problem for my son.  I would recommend the session to anyone who cares for an adult who has Down syndrome.  With the session you get access to Dr. Brown’s session slides.   It’s always better to be informed about what to look for and what to rule out before a crisis occurs.

The session is available through the 321 eConference Digital Library for those who attended Friday’s sessions.  If you missed the conference there’s still time to purchase access to all of the recorded sessions.  See the 321 eConference, or 321 eLearning sites for details.  The library will be available until May 2nd.

Additional Resources:

I found this in a pamphlet written by the DSA of Western Michigan .
You may also want to read this:

Depressive Disorders in Adults with Down syndrome – D. McGuire/B. Chicoine (1996)

The NDSS also has a page on Mental Health issues.
And if you still need more information:

Drs. McGuire and Chicoine wrote THE book.