March has been designated as Developmental Disabilities Awareness Month since 1987. President Ronald Reagan issued a Presidential Proclamation which called upon Americans to provide the “encouragement and opportunities necessary for people with developmental disabilities to reach their potential.”
February 26, 1987
By the President of the United States of America
Nearly four million Americans have grown up with severe physical or mental impairments that have slowed their learning, limited their mobility, inhibited their expression, and rendered them dependent on others for care and assistance.
For many of these people with developmental disabilities there is now the prospect of a brighter future and greater opportunity. Americans are becoming increasingly aware that such disabilities need not keep individuals from realizing their full potential in school, at work or at home, as members of their families and of their communities.
New opportunities have been created through the efforts of those with developmental disabilities and their family members, along with professionals and officials at all levels of government. Working together, they have brought about significant changes in the public perception of young people and adults with developmental disabilities, opening new doors to independent and productive lives.
One important new milestone is the fruitful partnership between government and the private sector in finding productive employment for people with developmental disabilities, people who might otherwise have been destined to a lifetime of dependency. In the past 2 years, the Administration's Employment Initiative has resulted in finding job opportunities for more than 87,000 people with developmental disabilities.
The Congress, by Public Law 99 - 483, has designated the month of March 1987 as ``National Developmental Disabilities Awareness Month'' and authorized and requested the President to issue a proclamation in observance of this event.
Now, Therefore, I, Ronald Reagan, President of the United States of America, do hereby proclaim the month of March 1987 as National Developmental Disabilities Awareness Month. I invite all individuals, agencies, and organizations concerned with the problem of developmental disabilities to observe this month with appropriate observances and activities directed toward increasing public awareness of the needs and the potential of Americans with developmental disabilities. I urge all Americans to join me in according to our fellow citizens with such disabilities both encouragement and the opportunities they need to lead productive lives and to achieve their full potential.
In Witness Whereof, I have hereunto set my hand this twenty-sixth day of February, in the year of our Lord nineteen hundred and eighty-seven, and of the Independence of the United States of America the two hundred and eleventh.
[Filed with the Office of the Federal Register, 11:58 a.m., February 27, 1987]
Before we delve into our story on the additional challenges caregivers are experiencing in providing necessary care to our intellectually and developmentally disabled (IDD) community, let’s clarify exactly what some of these disabilities are:
- Autism Spectrum Disorder
- Hearing Loss
- Intellectual Disability
- Learning Disability
- Vision Impairment
- And other developmental delays
The Centers for Disease Control and Prevention (CDC) defines intellectual disability as limits to a person’s ability to learn at an expected level and function in daily life.
The CDC provides a fact sheet about Intellectual Disability which helps define causes, symptoms or noticed behaviors, as well as guidance on what to do if you think your child falls into this category.
While the everyday challenges of providing care and a routine can be daunting and overwhelming, these challenges have become exponentially increased during COVID.
With many schools closed, special programs have been suspended. Our children are away from their teachers and friends, with very little socialization occurring. As many of you know, disruptions in established routines can cause many setbacks and regression of hard earned progress. The upset can also cause increased aggression, depression, sleep disturbances, and appetite disruption to name a few.
Many caregivers are having to wear many hats with the pandemic raging. Not only have their caregiving duties increased for other children, the full responsibility of caregiving for our developmentally disabled children without outside assistance is adding additional stress and worry to an already heavy load.
Having a plan in place should you get sick can help alleviate some of the anxiety associated with caregiving.
A plan is not only necessary for COVID, but also should something unforeseen happen like an accident or sudden debilitating illness.
A journal of all needs for your child is critical. A complete list of medications and dosages, physicians, pharmacies with contact numbers is a great start. Likes and dislikes for your child for everything from food preferences to daily activities, friends and favorite books is necessary should a secondary caregiver have to step in and takeover your duties.
Have whomever you choose spend time with you and your child learning the daily routine so that any change due to illness is not detrimental to your child and their daily lifestyle.
No one wants to think about death or an inability to care for their family. However; if you are the primary caregiver for a special needs child or family member, your wishes and future plan needs to be legally documented to ensure the safety and well-being of your child. That is the responsible and most loving gift you can give to your family.
The Special Needs Alliance (SNA) is a group of attorneys available to assist in all legal aspects for your special needs child. I did not seek permissive use on their materials, but you can find them at www.specialneedsalliance.org
In light of COVID, explaining all of the changes to your child is a job unto itself. Things such as communicating the need for masks and social distancing in a way that your child will understand and adhere to presents an additional but necessary task. Should your child become sick, you need to add how important it is for your child to communicate any symptoms to you as a constant and necessary task.
If your child has trouble comprehending all of the measures necessary to stay well, consider using visual cues such as pictures or videos to explain to your child.
Be sure to keep your health care provider informed of any noticeable changes in appetite, activity levels, sleep habits and behavioral changes (anger, depression, confusion, etc.).
It is important to remember that your child may believe all of the necessary changes are their fault or, the result of something that they did. This is why constant and EFFECTIVE communication is key to managing your new way of life.
There are ongoing efforts to have our loved ones with intellectual and developmental disabilities that also have underlying health issues placed higher in the priority tier levels for receiving the vaccine.
As priority placement varies from state to state, you need to research your individual state’s guidelines to see where your child is positioned.
I was happy to see that Louisiana has included children with Down Syndrome in the most recent priority placement tier level. I do fear that those with disabilities and those with other underlying conditions are being placed further down the priority list.
The fear families are feeling is real.
If your disabled child becomes sick and requires hospitalization, fear of your child not receiving proper care due to inability to communicate properly is totally understandable.
These people with intellectual and developmental disabilities who are infected with COVID-19 should receive equal access to testing and appropriate medical care according to the National Institutes of Health (NIH),a division of the US Department of Health and Human Services. NIH is the largest biomedical research agency in the world.
Many times, people will just assume your child is poorly disciplined or just “bad”. Education about your child’s behavior can help them understand children with disabilities. This time we are in is especially difficult on everyone. But they are even more difficult for your special needs child.
If you believe your child is experiencing any of the symptoms described throughout this article or, if you are worried about your child’s development and think there is a problem, please watch the following video: “Learn the Signs. Act Early.”:
You can also research other organizations that have various symptom checkers to help guide you to the proper resources for testing and treatment.
Our kids are vulnerable right now. Hopefully, ongoing efforts will help to prioritize our disability community in the vaccine strategy.
Mask up! Be Safe! Be Proactive!
“We shall draw from the heart of suffering itself the means of inspiration and survival.”
- Winston Churchill