WHAT IS DOWN SYNDROME?
Down Syndrome is a genetic condition where a person has an extra copy of chromosome 21. There are three different types of Down Syndrome, including:
Mosiac Down Syndrome; and
Translocation Down Syndrome
SCREENING & DIAGNOSIS
Many times, Down Syndrome is diagnosed prenatally, or before a baby is born. Two methods of testing to determine the probability of a baby having Down Syndrome are chorionic villus sampling and amniocentesis. Other times, a baby is diagnosed with Down Syndrome after birth based on physical features, such as almond-shaped eyes that slant upward, low muscle tone, small ears and a single crease along the hand known as a palmar crease.
AFTER THE DIAGNOSIS
Many families experience a range of emotions when their loved one is diagnosed with Down Syndrome. It is important that families take their time to process their emotions and concerns.
It is crucial that you find support for yourself and your loved ones. Talk to your children, your family, your significant other and your friends about your struggles and times of triumph. Beyond your immediate circle, you can find support through:
Your faith community
Online groups and listservs (Sunshine Squad is a local group for families)
Ask for help
There are times that may be difficult for your family. Be sure to ask for help, even if it is for something simple such as picking up a prescription. Getting time to recharge is critical for your well-being.
There are a variety of interventions that can be used for your loved one who has Down Syndrome. They include:
Behavioral Therapy; and
It is never too early to start planning for your loved one's future. He or she may require supports in making decisions, such as where to live and manage money. Many families believe that they are entitled to make decisions for their loved one throughout their lives because of his or her disability. THIS IS INCORRECT. Once your loved one reaches the age of eighteen, he or she is able to make his or her own decisions unless guardianship or conservatorship is established.
Guardianship and Conservatorship
Guardianship and conservatorship should be considered ONLY if your loved one will need assistance making day to day decisions. Guardianship takes legal rights from your loved one and can include the removal of the right to vote, enter into contracts, make financial decisions and more. However, you may consider different levels of guardianship, which enables your loved one to maintain certain rights, such as the right to spend his or her money as he or she chooses.
This is a common concern for many families--"Who will care for my loved one when I am no longer able to care for them?". Many individuals with Down Syndrome will require supports throughout their lifetimes which are funded through Medicaid. To be eligible for and to maintain Medicaid, an adult can have no more than $2000 in assets and less than $2,250 in monthly income. Some options to provide for additional financial supports are Special Needs Trusts and ABLE Accounts.