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Pros and Cons of RP

There are many studies documenting the increased stress of parenting children with certain special needs. However, much less is known about the impact of residential placement on families. One important study (Krauss et al., 2005) described the pros and cons of residential placement for parents of adult children with developmental and intellectual disabilities.

What parents report about having an adult child who continues to live at HOME:

For the Adult Child
Benefits of living at home:Challenges of living at home:
- Receives good care- Fewer services received
- Gets to interact and stay close with family- Adult child is not challenged
- Is happy at home- Feels isolated; lack of friends, social life

For the Parents:
Benefits of living at home:Challenges of living at home:
- No worries about quality of care; peace of mind- Managing adult child’s difficult behaviors
- Adult child is good company, fun to have around- Constant caregiving; hard to find respite care
-Shared love; sense of family togetherness- Stress of daily life, particularly on siblings
- Parents learn from adult child- Family activities limited; social isolation
- Adult child helps around the house- Can’t leave adult child alone; less freedom
- Worry about adult child’s future

What parents report about having an adult child who lives in a RESIDENTIAL SETTING:
For the Adult Child
Benefits of living in a residential setting:Challenges of living in a residential setting:
- Gaining independence, skills, confidence- Safety concerns
- Has good program, daily structure- Grooming/personal appearance concerns
- Has friends, social life- Less part of family life
- Age-appropriate lifestyle- Feels lonely

For the Parent(s)
Benefits of living in a residential setting:Challenges of living in a residential setting:
- Calmer at home, more typical family life- Sense of loss; parents miss adult child
- Not managing difficult behaviors- Concerns about quality of program, staff training
- Benefits to parents’ marriage, siblings at home- Feels worried, guilty
- Decreased stress- Loss of control over care; don’t know details
- Able to work; more leisure/free time- Concerns about adult child’s health, meds
- Improved social life- Lack of or poor communication with staff
- Greater peace of mind about adult child’s future- Limits on visits/contact with adult child
- Staff turnover
- Caretaking demands ongoing
- Missing caretaker role

Sometimes the high cost of residential placement is cited as a reason to avoid it. For children who truly require this level of services, this view is short-sighted and untrue. The President of the Autism Society stated to the House of Representatives Oversight and Government Reform Committee hearing on November 29, 2012 that:

“Access to appropriate services must be provided as early as possible. When this occurs the lifetime costs can be reduced by as much as two-thirds.”

As a society, and as parents, we need to take a long-term view. If a child has a lifelong disability, appropriate intervention can get the child closer to realizing their potential sooner, help them achieve their highest possible level of functioning, thus reducing services and costs in adulthood (which benefits the child and society). For example, the main reason that adults are referred for long-term care (or institutional care) is not being toilet trained. If this and other basic life skills can be taught, the child will require less intensive – and less expensive – services later in life.