The Future of Care for Adults with Down Syndrome

Options for Adults with Down Syndrome When Their Parents Can't Care for Them

June 21, 2023

Just a short backstory here.

I am the third child of six. My mom had a stillbirth of her fifth child, and my sister Kathy is her sixth. Kathy was born with Down syndrome. In the 1960s, doctors told my mom that Kathy would never walk or talk, and they tried to convince her to put her in a home. But my mom refused to believe them, and she brought Kathy home to raise with her four other children.

As a family, we raised Kathy and taught her how to talk.

Our German Shepherd, who always wore a harness instead of a collar, would sit in the backyard with Kathy for hours. He would sit next to her, and she would grab hold of his harness. He wouldn't move until she was standing and steady. Then, he would walk around the yard with her holding onto him. If she fell, he would sit until she was ready to go again. They did this for months until eventually, Kathy began walking on her own.

Kathy attended the special school here in town, graduating at 26 years old.

This was a proud moment for our entire family, both immediate and extended, as everyone had grown to love her.

Fast forward to 2018. Kathy is 49 years old, and my mom is dying of cancer.

My siblings have all moved out of state, except for my brother and me. My brother is not really equipped to care for Kathy, but I am a retired nurse, so it's not a problem for me. My sister, who lives in North Carolina, and I need to decide what is in Kathy's best interest. She has always been with my mom, and we think that an adult foster care or extended living situation would confuse and depress her. We believe that this would be the beginning of the end for her.

I live five minutes from my mom's house, even on the same road.

As my mom's health began to rapidly deteriorate, we decided that Kathy should not be in the house watching my mom slowly pass away. The decision was easily made that Kathy would come live with me and my family. We had the extra bedroom, and she would not have to leave the only town she has ever lived in. Originally, my mom's wishes were for Kathy to move to North Carolina to be with my oldest sister. However, after lengthy discussions with my mom and my sister, we felt that uprooting Kathy while she was grieving the loss of our mom might be too much for her at once. We decided that staying with me was the best option.

This was September 30, 2018. My mom passed away on December 14, 2018.

Kathy has adjusted extremely well to living with me and my family. She has handled my mom's passing probably the best out of all of us kids. Before my mom got sick, they attended church regularly, and Kathy has become extremely religious. This made explaining my mom's passing to her a little bit easier than we thought it would be. Now that my mom is gone, Kathy refuses to go to church, but her bedroom looks like a religious shrine. Occasionally, she will ask why mommy had to die, and I will remind her of the cancer my mom had. This usually makes her feel better.

When we went to court to obtain guardianship for Kathy, the judge was extremely impressed that there were two of us "stepping up to the plate."

He said that normally, they have a hard time finding people to take guardianship of special needs adults. But here he had two siblings who were coming forward wanting to share guardianship. This made me so heartbroken and sad to hear that even here in our little town in Michigan, there are people who turn their backs on family members with special needs because they don't want to deal with them.

We absolutely love having Kathy here!

She is fun, funny, helpful, and has the biggest heart of anyone I have ever met. I wouldn't change anything we've done. I just have a hard time thinking of what it would be like without her here or in a home somewhere. I could never turn my back on her! She's my blood and my baby sister. How can people do that? Is that how selfish people have become? How disgusting!

This is our Kitty Kat as we all call her. It was taken at her 50th birthday party we had for her last year. We figured since she will never be married and have that big reception we all love to have, we threw her a HUGE party with over 100 people in attendance. Rented a hall, hired a DJ, caterer, dancing, cake the whole 9 yards…she had a blast!!! ♥️♥️

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