“Reunited and It Feels So Good!”

One Family's Journey... an example for DD Awareness Month

Monique, mother of three (two daughters and one son with medical complexities) was beside herself during our first phone call.  Monique shared that her desire had been to keep Deacon at home with her forever, but due to multiple hospitalizations and issues with consistent nursing, she had to make a very difficult choice. Keep Deacon home and not be able to work/support her family or place him in a pediatric nursing facility so that she could support her family? An impossibly difficult decision!

With the help of Deacon’s insurance company and medical team, Deacon moved to a pediatric nursing facility after multiple hospitalizations when he was just 4 years old. Deacon remained at the facility for the next 3 ½ years which were some of the hardest years according to his mom.

During that time, COVID hit, resulting in the longest separation families like Deacon’s have ever experienced.  Facilities, like the one Deacon was in, shutdown in person visits, and virtual visits had to rotate to ensure that every child had a chance to see their family.  Monique recalls that she was not able to hold, hug or kiss her son for 64 days!

During that time, Monique reported that she told her mom she would find a way to bring Deacon home-one way or another!  

Monique heard about ODP’s commitment to reuniting families with their medically complex children in the community from her Managed Care Organization’s Special Needs Unit Case Manager. In March of 2022, Monique and the PCHC Family Facilitator had the first of many conversations in which they created the vision for what Monique wanted for Deacon and her family. She wanted all of her children together, she wanted to kiss Deacon good night and good morning! Monique wanted Deacon to play with his sisters, enjoy the excitement of holidays and rainy uneventful days with them under one roof.

In June of 2022, Deacon was again rushed to the hospital and at that point, it became clear to Monique that he needed to come home without any more facilities.  Due to the expansion of ODP waiver services that medically complex children are able to access, we were able to consider life sharing for Deacon and his mom.  

As described on the PA Department of Human Services website, “Lifesharing means living with and sharing life experiences with supportive persons who form a caring household. Lifesharing is recognized as both a close personal relationship and a place to live. Lifesharers offer individuals the opportunity to be part of a family and to participate in community life.”  This also meant that Deacon would be able to live in his home with additional support from the lifesharing agency, and Monique could additionally be paid to provide his care.

During that call Monique asked, how long until this can bein place?  How long until I can bring my son home?  In record time, four months to the day, Deacon was home, enrolled in a waiver, and was receiving the lifesharing service!

Today, Deacon is living his best life with his mother, and two adoring sisters.  He has stable nursing, and while it has not been easy the family has developed a routine that works for them.  Deacon’s oldest sister is his back up caregiver, and from time to time steps in to help when nursing staff is not available. His other sister is always willing and ready to help his nurses when she can. She is a strong advocate for and protector of Deacon.  The family is going to see the Phillies play to celebrate Deacon’s 8^th birthday this spring. Go Phillies!

What is the best part of lifesharing?“

It takes the weight off my shoulder between financially providing and physically and emotionally providing.  Right now, I have the option to be home to give Deacon and my other children my undivided loving attention.”

“I had a lot of guilt on both sides.  I had a lot of guilt at home and a lot of guilt at work because I wasn’t coming to work giving my all to my patients, colleagues and employer and then I also had guilt because I would come home exhausted and mentally drained.  So, I wasn’t giving my children my all.  Now I don’t have to worry about that.  It is really a blessing.”

To learn more about Lifesharing and the ODP consolidated waiver please use the links below.

Lifesharing:
https://www.dhs.pa.gov/Services/Disabilities-Aging/Pages/Lifesharing.aspx#:~:text=Lifesharing%20means%20living%20with%20and,to%20participate%20in%20community%20life.

Waiver services:
https://www.dhs.pa.gov/Services/Disabilities-Aging/Pages/Consolidated-Waiver.aspx