This is a Facebook post of mine from last week that I wanted to share here, as well:

I work for the @Down Syndrome Association of Middle Tennessee, have a God son with Down syndrome, and scores of friends with kids with Down syndrome. Suffice it to say that I ADORE kids/people with Down syndrome. I feel similarly about kids/people with any kind of disability, but this post is geared towards those with some form of intellectual or developmental disability. (which obviously includes a much larger population than just folks with Down syndrome).

I have, for years, advocated for the educational rights of students with disabilities. And I have consistently throughout those years encountered folks who make dangerous assumptions about kids, especially about kids with intellectual disabilities. It happened last week (3 year old with a chromosomal abnormality "needs" to be in a special education classroom because he likely "won't be able to handle" a pre-k classroom with a mix of typical and non-typical kids) and again this week (one reason elementary-aged student with Down syndrome is having behavior is that he "obviously doesn't understand what's being taught in the classroom").

In both of these examples, there was zero data or actual evidence that either of these assumptions were correct, and in both cases, had the assumption not been challenged, it would likely have led to a negative outcome for the student. In both of those meetings, I shared with the team the concept of "least dangerous assumption," with which I recently have become acquainted. Over 30 years ago, special educator Anne McDonnellan coined this phrase by stating that in the “absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to functional independently as adults.” She also argued that educators should assume a student’s “poor performance is due to instructional inadequacies rather than student deficiencies.” In other words, according to Ms. McDonnellan, we should assume competence and ability, not incompetence and inability, AND failing to do so threatens to deprive folks of the opportunities and exposures needed to lead them to living full, independent lives.

THIS, my friends, is the paradigm shift that I believe we so badly need in this world in order to move our wonderful friends with Down syndrome and other intellectual and developmental disabilities from the margins into the mainstream. Turning back to my examples above, I had to challenge the folks at the tables in both of those meetings -- how do we know that so-and-so won't be able to "handle" the inclusive classroom, I asked, and we have no evidence that so-and-so isn't understanding what's happening in the classroom; that's just an unsupported assumption, I stated. In both cases, I'm glad to say, there wasn't a whole lot of push back to my comments/questions, and one team member even stated at the end of the meeting that she "had learned a lot from me" during the meeting. Ha! Obviously, I take zero credit for having come up with this brilliant concept/way of describing how we should approach decision-making related to people with disabilities, but I am grateful that her ears and mind were open to hearing it.

With that, I will simply say that if each one of us can do our part in trying to shift the paradigm from what our kids and adults CAN'T do to what they CAN do, as well as to encourage others to (a) not make assumptions about what folks can/can't do; and (b) if assumptions are made, to ensure that they are the least dangerous assumptions possible, we can all contribute to making this world a much better place where our friends with different/better/amazing gifts are more fully included in every aspect of society!  #yesyoucan#yesican #yesshecan #yeshecan#thecanrevolution

 

Hello, DSAMT community.  I wanted to write a blog post and share a little about myself and my family with everyone.  You may be wondering….what brought me to DSAMT given that I don’t have a child with Down syndrome?  Well, the answer is a little long, but here goes.

Like many of you, I’m sure, my exposure as a child and teenager to individuals with disabilities was extremely limited.  I was born in 1966, before the passage of the federal law in 1975 that gave children with disabilities the right to attend public school.  There was a young man with Down syndrome who lived down the street from my childhood home, and my primary memory of him is him sitting on his ride lawn mower, mowing his family's large lawn.  Regrettably, I never knew much about him, and we never became friends, but I do recall wondering whether he went to school, and if so, where.  Now that I know a bit about the history of educational rights for folks with disabilities, however, I know that young man most likely did not attend school.  Which both floors and horrifies me.

My next exposure to the disability world was when I interned one summer during law school at Disability Education and Defense Fund (“DREDF”) in Berkeley, California.  I was the only intern that summer without either a disability myself or a family member with a disability.  I remember thinking at the time it was odd that I was there without a personal connection to disability.  I was just super interested in justice for underserved communities, including the disability community.  Little did I know that I, myself, would soon become deeply immersed in all things disability-related.

Flash forward to 2000.  My husband, oldest son and I were living in Maplewood, New Jersey, anticipating the arrival of our second child.  This pregnancy had been different than my first.  The baby was quieter, calmer, almost to a worrisome degree.  The baby was smaller by nearly two pounds at birth than my first, didn’t nurse well like my older son, and failed his hearing test in the hospital.  While none of these things were major red flags at the time, looking back, they were very early signs of what was to come.  We took our seemingly healthy baby home and over the next few months, I began to worry more.  Baby Graham didn’t smile when most babies his age were smiling, he didn’t turn his head when his name was called, and he seemed disengaged.  Then, he began missing major physical developmental milestones, like sitting up and rolling over.  I visited my parents in North Carolina with Graham and his older brother when Graham was around eight months old, and when I got back home, my Dad faxed me a one-page list of developmental milestones — his way of suggesting to me that something was “off.”

So, at Graham’s one-year check-up with our pediatrician, I again raised my concerns about his slow development.  Although Dr. Boodish tried to reassure me that all was well and that “all children develop differently,” he relented and referred us to a developmental specialist, who ran multiple tests, one of which revealed that Graham had “extra genetic material” on his 15th chromosome (official diagnosis: Isodicentric 15; now called Dup 15q syndrome).  And so our journey began.

I could go on and on about our 19 year journey with our wonderful, magical son, but I want to bring this back to my position with DSAMT.  Several years after Graham was born, dear friends of ours in New Jersey who were experiencing infertility issues decided to adopt a newborn with Down syndrome.  They asked my husband and me to be his God parents.  Although they now live in Wisconsin, and we don’t get to see them often, we adore our Patrick!!  Shortly after moving to Nashville, our family became friends with a family with a son with Down syndrome and we all became huge Brian fans!  A few years later, I had the opportunity to help that same family fight their school district’s efforts to force Brian to undergo an IQ test, something the family thought was inappropriate and unhelpful.  With the help of a lawyer friend of mine, and great courage on the part of my friends, Brian’s parents, the family won their case.

It was official — I was passionate about issues affecting kids with Down syndrome.  Over those early years in Nashville, I had also become passionate about helping families of kids with all kinds of disabilities navigate the educational system.  This passion led to several professional positions, culminating in my creation in 2011 of the Special Education Advocacy Center.  Over the next six years, SEAC would serve hundreds of families all over Middle Tennessee by helping them fight for the educational rights of their kids.  During those years, I became acquainted with Alecia Talbott and involved in various trainings and workshops for DSAMT.  Since then, I also have had the great privilege of sitting next to many parents of kids with Down syndrome in IEP meetings, helping them obtain appropriate services and supports for their amazing kids.  In short, I have loved getting to know and advocate for students with Down syndrome and their families!

Flash forward to 2019, when Alecia approached me about the possibility of joining the organization as Director of Policy and Advocacy.  I was, needless to say, THRILLED.  My journey to this place — like the journeys of each of you — has been long and windy, full of mostly good days but spotted with the dark, awful, challenging ones, as well.  I am grateful for that journey, though, and for our kids who make us better people and who teach us lessons we couldn’t and wouldn’t learn any other way.  I am grateful to be a part of DSAMT and I look forward to working with you all.

xo

Erin

In April of 2018 my daughter, Sharmane and I experienced the privilege of attending the National Down Syndrome Society’s inspirational and educational First Annual Down Syndrome Adult Summit.

With Sharmane getting older, forty-four at the time of the conference and dementia prevalent in people with Down syndrome, we mainly attended lectures related to dementia and Alzheimer’s. A few speakers provided insight into the early symptoms of Alzheimer’s, which are different for people with Down syndrome as explained below. Others described best practices for dealing with those experiencing dementia, and one lecture offered suggestions for preserving memories.

This essay is intended to help the parents, family, friends, and caregivers of people with Down syndrome to recognize and navigate the turbulent world of dementia if you must enter that realm.

Pre-Diagnosis for Alzhemier’s in People with Down Syndrome

The first symptom of Alzheimer’s in the general population is a short-term loss of memory. For people with Down syndrome (hereinafter: DS) the first symptoms manifest differently, often seen as:

• Stubborn
• Withdrawn
• Difficulty doing daily chores that had been easy

People with DS typically age 20 years faster than the general population. If a family has a history of developing Alzheimer’s at age 65, a person with DS in that family might develop Alzheimer’s around age 45. Alzheimer’s in NOT inevitable for people with DS. Recently, a person with DS lived to 83 years-of-age and never developed Alzheimer’s nor any form of dementia.

Current research shows that people with intellectual disabilities get Alzheimer’s at the same rate as the general population. Studies indicate 25% of the people with DS over 40 years-of-age develop Alzheimer’s. Once a person with DS is over 60 years-of-age the incidence of Alzheimer’s climbs to between 50 – 70% (Adel Herge, Helping People With Intellectual Disabilities and Dementia Live Life to the Fullest Seminar, 4/10/18 National Down Syndrome Society Conference).

Alzheimer’s can easily be misdiagnosed in people with DS as they are at a high risk for depression. The aforementioned three symptoms also present in people with DS who suffer from depression. In some cases the same three symptoms will present when a person with DS suffers from internal organ pain or if something disturbing has changed in the environment in which the person lives.

In order to correctly diagnose dementia the person being tested must have a baseline before the symptoms of dementia present themselves. DisDAT – Disability Distress Assessment Tool can be used to help determine the distress level for non-verbal disabled people. This tool helps caregivers track the moods and reactions of a non-verbal disabled person. This might be especially useful for an individual with multiple caregivers as it was develop in an institutional setting.

Post-Diagnosis for Alzheimer’s in People with Down Syndrome

Once a person with DS is diagnosed with Alzheimer’s a new plan of caregiving must be employed. The old methods will no longer work:

• Medications are tricky as DS brains react differently
• Non-pharmacological approaches should be tried first
• Beers List might be a good reference source for drugs used by older people
• Know your pharmacist and ask his/her advice (Adel Herge)

(Adel Herge)
Adel Herge, OTD, OTR/L, FAOTA, Associate Professor & Director of the BSMS OT Program at Thomas Jefferson University in Philadelphia recommends the Triatic Model:

                                        Person with Dementia

 

Caregiver                                                                       Physical Environment

Three factors are continually interacting for a person with dementia when an issue develops. The caregiver must try to determine the root cause of the issue which can range from being thirsty to the person seeing a picture on the wall that triggers a traumatic memory. The caregiver must understand that people with dementia cannot process as much information as they did, nor can they process it as fast.

Three rules for dealing with people who have dementia:

• Less is more
• Don’t argue with dementia
• No doesn’t mean no

Less is more – do not offer four options for activities today. Do you want to go for a walk in the park? If yes, go walk in the park. If no, proceed to option two, do you want to go to the library? If yes, go to the library. If no proceed to option three, do you want to…

Don’t argue with dementia – your sister’s dementia has progressed to where your parents can no longer care for her so she lives with you. One morning she asks, “Why have you forced me to leave home?” You reply, “Remember, mom and dad had to move into assisted living and they couldn’t look out for you. You agreed that living with me would be good and I’m so glad to have you here.” That is exactly the WRONG answer. The right answer doesn’t argue with dementia. “Before we discuss your home, would you like to have breakfast?” Everyone loves breakfast and by the time breakfast is over she is likely to be thinking about something else.

No doesn’t mean no – “Do you want to go to the park?” “No!” Do you want to go to the library?” “No! I don’t want to do anything!” “Ok.” People with dementia often do not say what they mean. You might ask if he or she feels alright, or wait fifteen minutes and then suggest something.

Be sure to take care of yourself. And relax the rules so that you can stay calm. If the person with dementia wants to walk in the afternoon instead of in the morning, walk in the afternoon. No, an afternoon walk doesn’t fit the schedule for that day, but the rules need to be relaxed.

Things that work when dealing with a person who has dementia:

• Live in their world. If they want to talk about relatives who have been dead for 20 years and talk about meeting them for dinner tonight, relive your favorite stories about them.
• Express affection – remind the person that you love them, that others love them.
• Be flexible – the person doesn’t like the way they did things before dementia invaded, so learn how they’re thinking now and adapt.

Managing dementia day-to-day can be difficult. Ms. Herge offered these tips:

*Simplify communication – only offer one topic or question at a time. This gives the person the ability to process the information.

*Simplify tasks/daily routines – lay the clothes to be worn that day on the bed in the order the person should put them on.

1. a person who likes to color:
   • Only provide 3 crayons instead of 64
   • Relax the rules, the tuxedo doesn’t have to be black and the sky doesn’t have to be blue
2. Add time for the planned activity so the person isn’t rushed. Even if the person is physically healthy, people with dementia just need more time to do things.

*Enhance activity engagement – people with dementia do NOT initiate, so you will need to include the person. This tends to hold true even for activities the person enjoys.

Modify your environment to be safe

1. For people with dementia, their world shrinks so be sure their areas are safe, only have things sitting out that they plan to use
2. Use contrast so people with dementia can see, hold white flowers where the background like the carpet is dark so they can see the flowers
3. Be cognizant of the smell, e.g. bleach

Hopefully these suggestions and the information presented here will help you recognize the signs of dementia in people with Down syndrome and care for that loved one if it develops. No cure exists for dementia so caregivers can only work with the afflicted person to make them safe, comfortable, and enjoying their lives given the new circumstances.

References:

NOTE: I, Joe Rinaldo wrote this essay by compiling data heard at the National Down Syndrome Society Conference of 2018 in Washington, D.C. All the credit for the research and methods described herein belong to the cited sources. Many of the ideas mentioned here were stated by multiple speakers.

Adel Herge, OTD, OTR/L, FAOTA, Associate Professor & Director of the BSMS OT Program at Thomas Jefferson University in Philadelphia, Tips for Caregiving: Helping People with ID & Dementia Live Life to the Fullest

Kathy Service, RN, MS, FNP-BC, Healthy Aging

Elizabeth Bodien, Sister/Guardian, member of NTC & AADMD and Jane Boyle, 40+ years in non-profit strategic planning & fundraising, Sister, Creating & Sharing Life Stories

Dr. Seth Keller, M.D.-Neurologist, NTG-CO-Chair and Kathy Service, RN, MS, FNP-BC, Decline in Adults with Down Syndrome; Assessment and Care Considerations

If your child or family member has Down syndrome, he or she may be eligible for financial assistance to help pay for any medical care, housing costs, caretakers, and any other daily living needs. The Social Security Administration (SSA) offers benefits for people who are unable to work or participate in typical childhood activities due to a serious disability. Down syndrome almost always medically qualifies for Social Security benefits, but financial eligibility may be a little more challenging.

Medical Qualifications with Down Syndrome

The SSA uses its own medical guide, known as the Blue Book, to evaluate all Social Security disability applicants and deem benefits accordingly. Down syndrome is listed as a qualifying condition in the Blue Book. If your child has Trisomy 21 or Translocation Down syndrome (98% of the Down syndrome population), he or she will automatically qualify.

Those with Mosaic Down syndrome may qualify, but your child would need more than a diagnosis to be approved. Because [according to SSA] people with Mosaic Down syndrome may not have as many intellectual or physical disabilities as those with other forms of Down syndrome, you’ll need to meet another listing in the Blue Book to qualify. Some complications of Down syndrome that may qualify include:

• Vision loss of 20/200 or worse in the best eye
• Heart problems
• Intellectual disabilities that make it impossible to work and earn more than $1,190 (in 2018)
• An inability to communicate with others verbally or visually
• Spinal cord injuries resulting in an inability to stand from a seated position or walk without use of crutches or a wheelchair
• Seizures
• Hearing loss

The entire Blue Book is available online, so you can review the Down syndrome listing or any other sections with your loved one’s doctor to determine if he or she medically qualifies.

Financially Qualifying with Down Syndrome

People with Down syndrome qualify for Supplemental Security Income, or SSI benefits. These are available for the most financially needy people in the US. There are strict income limits for people receiving SSI benefits. An adult applying for SSI could not earn more than $750 per month. Adults also cannot have more than $2,000 in saved income or available assets, such as a second home or a second car.

If you’re applying on behalf of a minor child, your income limits will not be as severe. You’ll have a monthly pre-tax household income limit depending on the size of your family. Larger families will have higher income limits. A single parent with one child could earn up to $38,000 per year, while a two-parent household with three children could earn up to $55,000 per year. You can review your specific household income limit online on the SSA’s website.

Unfortunately, household income is the top reason why children with Down syndrome are denied benefits. If you earn too much to qualify, try applying once your child turns 18. At that point your income will no longer count against your child, even if he or she lives at home.

Starting an Application

If you’d like to apply for SSI benefits on behalf of a loved one with Down syndrome, you’ll need to do so at your local SSA office. You can start the process online by reviewing the Adult or Child Disability Starter Kits—these will outline exactly what documents you’ll need to apply successfully.

To make an appointment to apply at your closest Social Security office, call the SSA at 1-800-772-1213. Most initial claims are processed within three to five months.

Additional Resources

https://www.ssa.gov/
https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm
https://www.ssa.gov/disability/professionals/bluebook/110.00-MultipleBody-Childhood.htm#110_06
https://www.ssa.gov/ssi/
https://www.ssa.gov/ssi/text-child-ussi.htm
https://www.disabilitybenefitscenter.org/blog/help-apply-for-benefits
https://www.ssa.gov/disability/disability_starter_kits_child_eng.htm
https://www.disabilitybenefitscenter.org/state-social-security-disability

_{Contributed by Eric Minghella from Disability Benefits Help}