Theme: Considering Out-of-Home Placement
No matter what the circumstances, the prospect of placing a child in a living situation outside the home can be daunting. As with most important decisions, exploring the range of possibilities is helpful. This guide is designed to help the family navigate the options and prepare for conversations with other family members, the child’s advocates, clinicians and others.
Theme: Considering Out-of-Home Placement
June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, shares openly the blowback she got when they chose group housing for Katie. “They thought we were giving up on her. I saw it as doing what was best for our family and for Katie.” There is so much pressure for parents to provide homecare and it can be perceived as being about parents’ values or capabilities. For June, it was an evolution that took into consideration the entire family.
Theme: Considering Out-of-Home Placement
“There is room for change along the way. I might choose a different option along the way.” June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, shares that every parent has to make the decision that is right for them regarding out-of-home placement.
Theme: Considering Out-of-Home Placement
June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, tells parents to be picky about finding just the right group home for their medically complex child. Go for visits and see if the other kids are the right mix for your child. What’s the schedule? How accommodating is the staff? Be picky and trust your gut.
Theme: Considering Out-of-Home Placement
June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes the transition of Katie to a group home and how it gave them respite and more time for their other daughter Alissa.
Theme: Considering Out-of-Home Placement
June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes the awakening that eventually Katie’s care would too much for them alone at home, exploring all the options, eventually finding the right place, and transitioning to the new home. It was like respite.
Theme: Considering Out-of-Home Placement
Parents demonstrate love in many ways, including ways that I am sure they would not have imagined or desired for themselves. I have observed the decision to utilize respite and long-term care to be one of those ways. I had my own assumptions about long-term care before considering the position of medical director at Seven Hills Pediatric Center. My views changed as I saw children and their families thrive following the loving decision to utilize long-term care. I believe families benefit when they have options. Knowing options is at the heart of pediatric palliative care, with a family then considering what option makes best sense for their child and family.
I have observed parents make this difficult decision for a multitude of reasons. For some, the complexity of their child’s care makes it difficult for their child to remain at home. I have seen families struggle as the amount of time needed to manage daily tasks for one child lessened available time with another child. As recent examples, a decision to utilize long-term care for one child then allowed more time with another child in high school, including time together to visit college campuses as well as enhancing time together before graduation arrived. I have also seen a recommitment in marriages and other relationships, such as the first vacation as a couple since the child’s birth or diagnosis.
No family makes this decision lightly. Parents share a variety of feelings, including guilt. What I have not observed is a family expressing regret. Rather, they express a sense of trade-off. They miss not having their child home. Yet they often express gratitude for their child’s increased attendance at school and daily activities, which occur on site. They also share the need to “let go” of certain expectations, such as “letting go” of how they would have done daily grooming of hair in a specific way, with a view of this being small in comparison to the benefits to their child and family. And they are grateful for the partnerships with staff that involve sharing hopes and expectations. In my partnerships with families, this includes a philosophy of care that is guided by principles of palliative care: medical care plans are decided in a shared manner and guided by goals, such as identifying care plans that best enhance attendance at school and activities and forgoing approaches to care that interfere with this goal.
Considering respite and long-term care is more emotionally difficult than I will ever fully understand. A parent may fear that others will never be as attentive as they have trained themselves to be. I have discussed the option of long-term care with parents as a “leap of faith” that is never permanent. We are never trying to “sell” long-term care as being better. Rather, it is an option to consider when a child’s complex care needs are exhausting the emotional and physical reserves of a family. I am often in awe of what families manage out of a sense of love. I hope the support that others can provide, including the option of respite and long-term care, can allow more energy for sharing love as a family, rather than feeling obligated to show love through all of the daily tasks that are often needed for a child with complex medical care needs. I myself am grateful for this opportunity to better understand this option for families.
See Dr. Hauer’s videos and hear her talk with a mom about the decision to place her son in a residential home.
Theme: Considering Out-of-Home Placement
Courageous Parents Network follows up with Sherri, three years after the first interview. Sherri shares her decision to place Rachel in a long term care residential home, how Rachel is doing, and how everyone has adapted to this new arrangement.
Theme: Considering Out-of-Home Placement
Devoted sister Lexi shares her reaction to her family’s decision to have Barry live in a pediatric residential home, and how she continued to watch over and advocate for him there.
Theme: Considering Out-of-Home Placement
The mother of a boy with severe neurological impairment and his pediatric palliative care doctor talk about how difficult the decision to move her son to a residential facility was for the siblings, especially the youngest daughter.
Theme: Considering Out-of-Home Placement
“I knew in order to keep him safe and give him quality for whatever time he had left, I had to let go.”The mother of a boy with severe neurological impairment and his pediatric palliative care doctor talk about how, after 14 years of caring for him at home, she came to decide that the best thing for his care was to move him to a 24/7 residential home.