Considering a Placement Change?

What can parents do if they think their child might benefit from an out-of-district placement? Or if they want to explore their child’s options? Here are some steps parents can take:

• Call a Team Meeting – parents have the right to call the IEP team to meet at any time and for purposes other than the annual IEP Meeting to discuss the child’s progress and raise this question. Parents should convey with honesty the degree to which they:

1. 1. are struggling at home
   2. feel unable to help the child generalize skills learned at school to the community and home settings
   3. are unable to manage the child’s disability and are worried that an out-of-home placement may be necessary.

The Team may be able to provide additional resources (e.g., in-home supports, parent training) so that every available option is tried before considering residential placement.

• Raise the question with professionals working with the child and invite their input (e.g., psychiatrist, pediatrician, psychologist, social worker, speech/language pathologist, occupational therapist). They may have assisted other families with this question and can offer their experience with how it has worked out. Note that teachers and other public school professionals may be less free to discuss this option even informally. The IEP team is ultimately responsible for making this decision, and it is then the school district’s responsibility to pay for it. This means that public school professionals may be more cautious about saying what they think, as these decisions must be made collectively by the team.
• Request a Functional Behavior Analysis, which is an assessment conducted by the school to understand why a problem behavior is happening and to offer solutions. This is available at no cost to the parents.
• Consult with your Child’s Treaters – ask private treaters (those the child sees outside of school) for their opinion about the current placement and their knowledge of alternatives
• Obtain an Independent Evaluation (e.g., neuropsychologist, developmental specialist) with this question in mind. If parents don’t already have such a professional involved in the child’s care, this evaluator should conduct observations at home and school as part of the assessment, attend IEP meetings, and become part of your treatment team.
• Consult with an Educational Advocate – the Federation has produced a brochure on selecting a special education advocate (PDF). It is also available in Spanish (PDF)

When the Team does not agree or has reached a standstill, parents can request:

• Mediation – provided free through DESE; some families learn of options they didn’t know were available to them through mediation
• Consult with a Special Education Attorney
• Due Process Hearing (through the Bureau of Special Education Appeals) to resolve differences with the public school
• Consider Unilateral Placement (or other option discussed at Mediation, such as cost-sharing). Some families decide to send their child to a private day school and pay the tuition, without being referred by the public school. The burden of proof is then on parents to show that the out-of-district placement can provide the child with FAPE. The child’s educational functioning at the private school can be compared to that of the public school. This may involve a lengthy legal process in order to get the public school district to be responsible for all or some of the funding.

Note that pursuing any of the above options when trying to change a child’s placement can be a long process that takes months or even years of negotiation.

Families are occasionally ready to initiate residential placement while other members on the team, such as school personnel, disagree. If parents have taken many of the other steps listed in “Steps Parents Can Take,” then hiring an advocate is a good first idea, as this is generally less expensive than hiring an attorney. Reasons to consider hiring an advocate include:

• Parents do not feel heard at Team meetings
• Parents’ outside experts (e.g., the child’s treaters’ recommendations) are not given much weight in making decisions at Team meetings
• Consistent disagreement about the child’s needs and services

A skilled advocate understands your child’s disability, and knows local schools and programs so that parents can make a stronger case for residential placement to the child’s public school team. Good advocates are knowledgeable about special education law (but not to the degree of an attorney), and can inform parents when it is time to hire an attorney, e.g., when negotiations with the public school have stalled. The Federation has a list of people who have been trained in their Parent Advocacy Training course and are willing to accept clients at a reduced fee. (See: The Federation’s “A Parent’s Guide to Selecting a Special Education Advocate in Massachusetts” [PDF].)

Your child’s school district may provide you with a list of schools that they recommend or have had positive experiences with. It still helps to research these schools and additional options yourself.

Parents should learn from schools’ websites whether they are accredited, and by what agencies. There are many types of residential schools but not all are considered “residential treatment.” Settings such as boarding schools, wilderness programs, or other non-accredited schools may not have a similar level of professional staff to assist with treatment and education planning compared to special education residential schools.

The school’s website should describe what students they serve. This can be confusing for parents, as children may have more than one challenge (such as autism and a mood disorder, or a psychiatric and learning difficulty). Parents should ask the school’s staff if they can accommodate both needs. Look at and ask about the credentials of the educational and mental health providers to determine if they are qualified to address the complexity of your child’s needs.

“MAAPS website offers a school comparison checklist, and parent listservs can be a helpful way to obtain input from other families in similar situations.

Questions to ask potential residential placement options:

Several websites have created lists of questions that parents can ask potential residential schools.

The National Alliance on Mental Illness has an informational brochure online titled: A resource for families considering residential treatment programs for their children (PDF). It contains practical information to help parents grapple with out-of-home placement decisions once they have exhausted community resources. The information is targeted primarily for parents of children with mental health and behavioral challenges. Sample lists include questions for parents to ask potential programs, factors to consider when contemplating this decision, as well as rights of youth and families to prevent abuse and neglect in such settings.

CHART’s website also provides a list of questions parents can ask potential schools.

Residential placement (RP) for children with psychiatric difficulties may be approached differently than RP for children with severe IDD. RP may be a short term solution (e.g., a few weeks or months) to help the child/family manage a crisis (e.g., an episode of violence, suicidality, a succession of brief hospitalizations with no resulting stabilization). No one knows or can predict how long a child will require RP, which can range from short to long term. This may not be clear at the beginning of a placement or even after a period of time.

Safety is understandably a primary concern of parents who have vulnerable children. The sad reality is that children with disabilities are mistreated at higher rates compared to children without disabilities (see report from the Disability and Abuse Project [PDF]).It is wise for parents to research the schools their child’s team is considering and learn about their record of reported abuses

Agreeing to a residential placement for a child with a disability is truly an act of trust. However, this does not mean that parents stop being observant. Many parents grapple with fears of varying degrees when sending children to activities they are not supervising. Research on other vulnerable populations (e.g., individuals with dementia in nursing facilities) has shown the following to decrease risk of abuse:

• Family members should make frequent visits and phone calls with their child; be a regular presence at the residential placement, noticing whether the child is happy, well-groomed, etc.
• during calls and visits, take a few moments to interact and form relationships with staff who care for the child
• supply your child’s room with family photos and pictures of loved ones
• participate in events at the child’s school to become a part of the community (be more of an insider to the school’s culture) and to notice how other children are treated

In general, create on-going reminders that the child is a person who is part of a larger network and that other eyes are monitoring their care. Form and maintain positive relations with front-line staff, expressing appreciation for the special things they do. Parents can model how they want their child to be treated by treating the staff with similar respect and dignity.

Simply asking this question is understandably highly emotional and heart-wrenching. We acknowledge that this goes against the grain of what we have in our minds as “good parents.” No one dreams about sending their child away to be cared for by strangers. Parents may ask themselves, “Am I a bad parent for even thinking about this? Does this mean I’m giving up?” While it is important for families to exhaust all available options and avoid an out-of-home placement if possible, it is not a sign of weakness or parental inadequacy to consider this alternative.

It is difficult for others who have not been through this process or are not witnessing directly the day-to-day struggles to comprehend why a child would need residential placement. It is rare to have a child with a unique combination of severe limitations in their functioning and some degree of aggression toward themselves and/or others. Most people cannot even begin to imagine the kinds of extreme or unusual behaviors that families see every day. If someone has never known or seen a child smash their head through a window, repeatedly scratch themselves until they bleed, or engage in other bizarre behaviors, it might be difficult to understand why a child would need supervised professional care 24-hours/day.

It is important for parents to know that it takes courage to contemplate this possibility. This means that parents believe their child deserves a chance at fulfilling their potential. For parents who are just beginning to contemplate the possibility of residential placement, it may be of some comfort to hear from parents who have gone through this (link to parents’ stories section). Parents as early as one month into their child’s residential placement have been pleasantly surprised at how happy their child was in their new environment and how much growth occurred in a relatively short period of time. Some parents regretted not making the decision sooner, stating that this was the best decision they could have made for their child’s well-being.

There are different ways to address the question. One is to look at the most common reasons for admission to residential facilities. Another is to understand the legal basis for why school districts make this decision.

Reasons for admission to residential facilities (according to a study done by Abt Associates, 2008). Review this list and note if any apply to your child.

Families’ Reasons

• the complexity and severity of their child’s condition
• safety and other needs for 24-hour structured treatment
• challenges in accessing appropriate outpatient care for the child and themselves
• preference for all aspects of treatment and education within one system

Professionals’ Reasons

• destructive acts in the community
• self-injury or other danger to one’s self
• inability to function in daily activities
• physical aggression, assault, or danger to others

This study also reported the children’s diagnoses at admission:

• mood disorders (such as depression, anxiety, bipolar 91%)
• impulse control/attention problems (91%)
• aggression/oppositionality (90%)
• post-traumatic stress disorder (84%)
• learning disabilities (76%)
• substance abuse (70%)
• psychosis (63%)
• communication disorders (48%)
• autism spectrum disorder (ASD; 40%)
• eating disorders (34%)
• sleep disorders (27%; note that the sum of percentages exceeds 100% because some children have more than one condition).

The legal reason for residential placement referrals by public schools is that the child’s IEP Team agrees that they cannot provide FAPE to the child. This can be difficult for schools to conclude, especially given their legal requirement to educate children in the Least Restrictive Environment (LRE). Sometimes a private day placement with increased home-based support will be tried first, before referring to residential. The school district is only obligated to provide residential services when they are required for educational reasons. For children who have serious mental health challenges and involvement with the Department of Mental Health (DMH), sometimes the residential placement and referral will come from DMH. For other children, DMH will pay residential costs while the public school district will pay for the day school costs.

How do I know if a Residential Placement (RP) is right for my child?

No two children or families are alike, and there is no right time to consider a decision about residential placement. This is a highly personal decision. Many factors should be weighed, including all of the pros and cons of residential placement, as well as the pros and cons of keeping a child at home. This list should be generated not only for the child, but for other family members as well. Being aware of what the child and other family members have to gain and lose with all available options can be helpful in deciding what is and is not tolerable. Some families decide they cannot bear the pain of being separated from their child, and others decide they can no longer manage daily injuries at home due to the child’s self-injury and aggression toward others.

Looking at the data on reasons children are referred for residential placement is one way to help parents sort through this difficult decision-making process. Parents may also come to believe that their child deserves the best chance to learn and live life to their fullest potential – even if this is at a residential school. It may take years of grappling with this option for parents to feel comfortable or ready for it.

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:

What parents report about having an adult child who lives in a RESIDENTIAL SETTING:

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.