Category Archives: Caregiving

All About Dental Care: Death, Research and Advocacy

The news story

A terrible story hit the news recently. It involved a young man who had Down syndrome who died after receiving dental care. The family of the man has been waiting for justice for four years.

We see too many stories like these: ones involving innocents who die at the hands of people in power who we trust with our loved ones. These stories make us wonder if we are doing all we can to protect our loved ones and the rest of our community. Continue reading All About Dental Care: Death, Research and Advocacy

Perspective – Life in a Group Home

Imagine

onewayImagine it, someone else makes all of your decisions: where you live, who you live with, and what your daily routine entails. This person might be a family member, but in most cases everything from the choices available to you to the final decisions made are governed by someone you don’t know.

Someone who doesn’t even know you controls your life.

Continue reading Perspective – Life in a Group Home

Acceptable RIsk?

By: Stephanie Holland
This week another story of an adult who has Down syndrome gone missing came across social media.  The 35-year-old woman was found, nearly a week later, but her story brings up more questions about what is “acceptable” risk when it comes to our loved ones.

The Dignity of Risk

Caution tape

Denying the mentally retarded exposure to normal risks commensurate with their functioning tends to have a deleterious effect on both their sense of human dignity and their personal development. In addition, the removal of all risk diminishes the retarded in the eyes of others.

Perske, Robert.”THE DIGNITY OF RISK AND THE MENTALLY RETARDED,” MENTAL RETARDATION, Vol. 10, No. 1, February, 1972.
As parents and caregivers, part of our job is to keep our loved ones safe, regardless of how old they are. It can be tricky trying to balance between being overprotective and justifiably cautious. Perske coined the phrase “dignity of risk” in the early ’70’s but it’s still one of the most difficult concepts in caregiving for parents of children with intellectual disabilities.

Continue reading Acceptable RIsk?

W – Work that Needs Doing

By: Stephanie Holland
Work on The Road We've SharedThose of us with adult children know that we, as a society, have come a long way in terms of advocacy and services for people with intellectual and developmental disabilities (ID/DD);  but we also know that we still have a long way to go before our children are fully accepted and understood.
Today we’ll look at what kinds of projects are on the table right now, and where we might want to go next.Our community has been celebrating a victory lately: the battle to get the federal ABLE bill passed took almost a decade.  Parents and advocates from the Ds community fought in the trenches with people from many other disability groups.  That kind of teamwork and dedication is necessary to accomplish the big tasks. The National Down Syndrome Society was among the leaders of that charge, and they have a well thought out plan for what comes next. During the 321 eConference, Ginny Sessions Siller, and Heather Sachs talked about the NDSS agenda for 2015.  The NDSS National Policy Center is heavily involved in passing and tracking the progress of ABLE bills at the state level.  Both the NDSS and the NDSC have a system where you can sign up for alerts when support is needed from the community. 

Continue reading W – Work that Needs Doing

The Caregiver’s Notebook – A Review and Giveaway

The Caregiver's Notebook on The Road We've SharedThis year, we’ve been talking a lot about the joys and responsibilities of caregiving for adults who have Down syndrome.  We all need a little help every now and then, and I’ve been extremely grateful for the way people have come together on The Road to support each other.  One thing I’ve become aware of from talking to others is my own need to put more of our daily routine and important information in writing.

If something were to happen to me, would others be able to continue my son’s care with minimal disruption for him?  

We all know how important predictability can be for those we love.  But how do we get started?  I’ve recently been given the opportunity to review a new tool called “The Caregiver’s Notebook – An Organizational Tool and Support to Help You Care for Others” by Jolene Philo.  If you’re anything like me, (and a daunting task leads to procrastination) you’ll love this!  I’ve put this book at the top of my New Year’s resolution list of “to-do’s.”

One of the great things about this book is that it’s divided into sections, each with instructions and inspirational stories that get you motivated. It lets you choose what part to tackle first.  For us, Josh’s medicines and recent lab results are important right now.  The sections for “Medications” and “Medical Information” will have top priority.

Continue reading The Caregiver’s Notebook – A Review and Giveaway