A psychologist, social worker, chaplain and/or spiritual leader can provide a space for talking through emotions and concerns. A social worker can connect you to resources and services available in your community, and advise you on the practical and logistical steps necessary as you explore your options. An attorney or family advocate can help you navigate the policies and procedures around financing, including setting up a special needs trust.
Out-of-Home Placement
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No matter what the circumstances, the prospect of placing your child in a living situation outside of the family home can be daunting and upsetting. But there are many reasons to consider out-of-home placement. Investigating and, if appropriate, choosing out-of-home placement is a journey. There are no right or wrong answers. Preparing yourself with an understanding of your goals for your child and family, and the options available to you is a good first step toward the best possible outcome for the entire family.
Reasons to Consider Placement
A wide range of circumstances may prompt your family to think about out-of-home placement. Your child may have a known disease progression leading to increasing care needs. These needs, whether physical, medical, or behavioral–or some combination of these–may require more skilled care than you are able to provide at home. Sometimes there is a shift in baseline or a continued health decline that results in the need for more intensive medical care than is manageable at home, even with outside support.
Consideration of out-of-home placement may also be prompted by a time of change in family circumstances (e.g., parental separation or divorce, birth, death, empty nesting), or when there are other health considerations in the family. Additionally, parents may worry about who will care for their child when they are aged or deceased. This may be especially true if your child’s disease trajectory is relatively long, and they are expected to reach adolescence or adulthood. Considering out-of-home placement may help ease this worry about your child’s future.
As you explore the options, remember that it may take time to find the right fit. Depending on your child’s needs, you may discover just the right setting in your own community, or you may have to find care in another location. Seek guidance but trust your instincts as a parent. It is important that you find a setting that meets your child’s needs, as well as your need to communicate and work with the staff and treatment team in a way that feels comfortable to you.
Questions to Ask
Choosing a residential or extended care facility for your child can be difficult if you are unsure of what to evaluate. It can be helpful to compile a list of questions to ask when researching or interviewing a particular facility. These questions may include:
- How does your team approach patient care?
- Can you tell me a bit about what it’s like to be here, or to be a family whose child is here?
- How does the treatment team communicate with parents?
- Based on your understanding of my child’s needs, how would your program benefit my child?
- Do you have any concerns about my child’s participation in your program?
While you will certainly go into much greater detail discussing your child and their specific needs when making a decision about out-of-home placement, questions such as these can help to give you a general impression of a facility as you begin to assess your options.
Deciding whether to place your child in a living situation outside of your home will involve many factors. In addition to your child’s needs, you may need to consider the needs of other family members. Out-of-home placement may allow you time to tend to yourself, your other children, and your partner in ways that might not otherwise be possible. You may discover, too, that your child would enjoy the opportunity to engage with new people and to have new experiences.
As you explore out-of-home placement, a wide range of feelings and emotions may arise. Anticipating and naming them can be a helpful coping tool. It is common to experience sadness, grief and anger at the situation. No matter how appropriate and caring the new environment, your child will no longer be living in your home. The life that you expected to have with your child is changing again. And along with missing your child, making this decision may be an acknowledgement that your child’s condition is advancing.
You may feel disappointment or guilt at not being able to keep your child at home, or anxiety about handing over responsibility for your child’s care. At the same time, it is not uncommon to feel a sense of relief and peace.
However rational–or even essential–your choice of an out-of-home placement may be, your family will likely face questions from others. Some people, including extended family, may judge you. As painful as it is to deal with this, the most important question is whether this is the right choice for your child and family.
Models of Out-of-Home Care
There are many out-of-home care models to consider. Some of the most common models are:
Residential (boarding) School
Some specialized schools offer a residential program. Children live on campus during the school year with breaks for holidays and summer vacation. This option allows a child with specific needs to access services and care that may not be available in their local community, and may offer the child a sense of their own community.
Skilled Nursing Facility
Children with more complex medical needs, such as those who are vent-dependent or who require constant nursing care, are often best cared for in a skilled nursing facility. Pediatric skilled nursing facilities have 24/7 nursing care to address medical needs and support the child’s social, emotional and developmental needs.
Group Home/Supportive Housing
Medical and transitional group homes offer varying levels of skilled nursing care and supportive mentoring in a home-like, community environment. Group home staff work closely with family members to integrate life between the child’s home and the group home if and when appropriate.
Short-term Respite Care
Many state and local agencies will offer families of medically complex children some form of respite care. This may be in the form of a financial grant to fund in-home care or an opportunity for a child to be housed at a respite facility for short periods of time.
