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Respite Care May Be More Beneficial Than Autism Therapy

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A little money spent on temporary relief for caregivers goes a long way toward keeping kids and young adults with autism out of psychiatric hospitals, a new study suggests.

For every $1,000 states spent on respite services in the previous 60 days, researchers at the University of Pennsylvania found an 8 percent drop in the odds of hospitalization.

Meanwhile, the level of therapeutic services — including speech, occupational, behavioral and other therapies — provided to an individual with autism did not impact the likelihood that they would end up in a psychiatric hospital.

The findings, published this month in the Archives of Pediatrics and Adolescent Medicine, come from a study of records for over 28,000 kids with autism ages 5 to 21 who were enrolled in Medicaid in 2004.

During the research period, 675 of the children spent time at a psychiatric hospital for issues related to their autism diagnosis.

“Raising a child with ASD is fraught with challenges and can place considerable stress on families. In many cases, hospitalization may result as much from the stress the child’s behavior places on the family as from the behavior,” wrote David Mandell of the University of Pennsylvania and his colleagues in the study.

Identifying ways to reduce psychiatric hospitalizations among those with autism is important, the authors indicate, because previous research has found that those with the disorder are far more likely to be hospitalized than their peers with other psychiatric or developmental conditions.

Currently, respite care is not offered to Medicaid recipients in every state, something that the study authors say ought to be reconsidered given the positive results shown in their research.

Mandell and his colleagues said they found it “puzzling” that therapeutic services did not also mitigate the odds of hospitalization.

“The lack of association between therapeutic services and hospitalization raises concerns regarding the effectiveness of these services,” they wrote.

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Comments (23 Responses)

  1. THD says:

    This article is disturbing because it casts doubt on proven therapies that help children with communication and adaptive functions. Respite is a mental health break; it would be expected to improve mental health outcomes, such as psychiatric hospitalization rates. Hospitalization is NOT the expected outcome of ineffective speech, OT or PT. Psychiatric hospitalization is the outcome of overwhelming stress. When we allow attacks on the therapies to go unchallenged, we endanger the necessary services to children and adults who need improvement in their adaptive function in the home, school and community. Hospitalization is NOT the appropriate outcome measure.

  2. Michael Moore says:

    I also believe that the caregivers need counseling support. They need to know that are also a valued member of the therapeutic team and even them team gets a break away from the children they service. Parents/caregivers sometimes feel guilt about not being there always to help, but definitely need the break. I thank the authors of this study to bring to like the need for respite time for caregivers. It is very disconcerting that the therapeutic interventions did not mitigate the odds of hospitalization. Especially, given the costs of these services.

  3. annie says:

    I fully agree with this study. I have a child with a similar diagnosis, often misdiagnosed as ASD, and his behavior dominates our family’s life. Therapy may be beneficial to his progress, and I consider it to be crucial to his success in the future, but it does not reduce my stress in any way whatsoever. Therapies are not a break, it’s an hour where I have to worry about and discuss all of my child’s disabilities with a professional, then in a case like mine where there are 5-6 therapists involved, each one gives me “homework,” or new therapy tactics to try by myself at home. This “homework,” can be really hard to complete between sessions, and if I forget one or fail to remember one, I feel bad and more stressed out than I did before because I can never do enough for my extra special child. Therapy also is expensive, an additional stressor, and therapists almost always request that you buy “stuff” which adds up financially big time, and leads me to worrying about money. During respite I don’t have to worry about my son’s problems, and I get to have a few moments that don’t involve high intensity screaming or physical assault. On top of that I get to know my child is safe with a professional respite person, so I have no guilt about leaving him as I usually do when he’s with a family member.

  4. Jane Cutter says:

    re: “Mandell and his colleagues said they found it “puzzling” that therapeutic services did not also mitigate the odds of hospitalization.”

    The other services may be effective but not in preventing the need for hospitalization. It is a question of the outcome variable beign studied. Even if a child’s speech or behavior is improved, parenting a child with autism is extremely stressful. Other research has indicated that the stress level for parents of kids on the spectrum is akin to PTSD. I don’t think we should simply fund respite care and stop funding OT or speech therapy because those services are not correlated with reduced hospitalization rates.

  5. Sue says:

    I’m sad to see that someone (“THD”) sees the researcher’s comments as an attack on proven therapies. Personally, I think they shine a light on areas where therapies can be be improved, expanded, or added to. Therapies are studied and “proven” from the researcher’s point of view (did the child progress as expected). A child’s life and development is much, much deeper and broader than skills taught by OT, SLP, ABA etc. Parenting a child on the spectrum is an enormous, relentless job – rewarding and full of joy, but also overwhelming and stressful. Surviving in the real world requires so much more than language and “life skills”. If looking at where proven therapies are weak and need improvement is seen as an attack, then we’ll start fighting when we should be working to make things better.

  6. al pfadt says:

    This finding makes perfect sense when the problem is considered from a social ecological perspective. The child with autism is only one element of an entire social system that contributes to the level of distress a family experiences. My agency has provided crisis services form families who often benefit from knowing that they have our crisis hot line number to call if they have an acute behavioral episode that otherwise might require a 911 call and a trip the the psychiatric emergency room. Not only are these supports less costly that er visits, they are much less traumatic for the family.

  7. Kris says:

    As a parent of two young adults with ASD I agree respite is crucial and absolutely necessary. But it is only one part of an entire program to support successful outcomes for those on the spectrum and their loved ones. To discount the benefit of therapeutic services is not a good idea.

  8. Elsa B says:

    I run a summer camp for people with autism in North Carolina, we get amazing reports from our families on so many differnet levels. Not only do most of our campers have huge jumps in self-esteem and confidence, but they also see increased communicaiton skills and more of an interest in peer interaction. Many of our families use this week as time to focus on their children who don’t have autism, some do much needed repairs to their home that they wouldn’t be able to do with their child there, others take trips to places that they may not be comfortable taking their child with autism, or many just going home and live their daily life without worrying about their child with autism.
    Therapy, of all kinds, is much needed for many reasons and I wouldn’t ever discount a parents effort in this area, but the relief I see in parent’s and caregiver’s faces on Friday afternoon when they pick their camper up is just wonderful. They are well rested, and ready to continue with the challenging job of being a parent! Summer camp does wonders for all who are involved!

  9. Nicholas Tessler says:

    “…temporary relief for caregivers goes a long way…” is an insight that can prevent a myriad of ills from occurring in families with one or more autistic children. Money –and organization– for this objective is a great idea.
    In 1965, I began working at the Nassau Center for Emotionally Disturbed Children, a private school facility in Woodbury, Long Island, set up by parents who had no educational or training facility for their autistic children. Eventually, under the leadership of Dr. Margaret Shodel, respite opportunities became available for some families in 1969.
    A residential center eventually came on line with a formula of 5 days spent in school and then directly into the Residence for up to 15 children (all in the same designed building). The children spent Friday night until Monday morning in their own homes. The children’s admittance to this program was for several months. As well, the Residence could take in other additional children during family crises periods or special events or parental vacations on short or even no notice.
    This Residence was not custodial by any means. It was formed in collaboration and with supervision by a major hospital with psychiatric and medical support. Among the goals were the teaching of additional life skills, group interactions, and improved medication administration and supervision. It was a planned environment to improve the abilities / functioning of selected children. And it did!
    Remarkably, the greatest benefits achieved were for the family as a whole unit. The stress in many parents’ marital relations decreased as reported by them; suspected abuse levels in certain families seemed to decrease; parents reported that they finally had time (and lowered guilt feelings) to give their other children the focus and positive attention they were yearning for; additionally, teachers in the Nassau Center day program saw marked improvement such as less acting behaviors, tantrums, or sadness.
    The feelings of liberation from full time devotion to the ‘special’ child allowed families to feel like, for the first time in years, the household members who were not autistic could rest, regain energy, and carry on for the long haul into the future. A family could now have the opportunity to look forward to their special needs child coming home.
    Most children in the residential program fared well and adapted to the ambitious program probably helping to hold back a number of potentially serious scenarios from developing.
    My experience was that the improved family situation allowed learning and therapeutic interventions to work better. It was amazing how the struggles of all involved became more manageable.

  10. Amy C. says:

    The headline of this article is misleading. Respite care is beneficial for family systems for a number of reasons, only one of which is the reduced costs because of the association with fewer psychiatric hospitalizations (which I would argue is a bonus, not it’s primary aim). But in this highly charged budget-conscious environment where the only costs that seem to count are those that are easily counted, that’s what gets the attention. To say that because of that association that respite care is MORE beneficial than direct treatment services that don’t reduce psychiatric hospitalizations is to create a false dichotomy. Autism treatments are designed to address and mitigate the core deficits that make life so hard for a person on the spectrum and for their family. Their measure of effectiveness is not and should not be whether they reduce costs from hospitalizations. The danger of this article is that people will just focus on the title, and cite it as more “evidence” that these programs (which are proven to help!) are a “waste of money” and ripe for cutting.

  11. Johannes says:

    It is not puzzling at all. We are comparing two different situations. After the Recent Christmas vacation many of the students did fine but especially the students who have relationship problems were not reacting well and despite a low key approach I did not feel I made contact with them. I tried to access them as humans and forget about my therapy goals.
    As I tried to make contact with the students I considered the challenge parents have and yes I heard it in the schools, the kids have been sitting in front of the TV for 10 days and now they don’t want to work. This may be true or not. I considered what would I do if I were a parent and had a son or daughter whom I either have to engage which takes planning at a busy time or I can let him/her enjoy TV.

  12. Sheila Stone says:

    and on a different and sadder, but, a yeah, told you so, note…guess what. parents might be the experts on their kids after all. After ALL THESE YEARS I STILL HATE HATE HATE that I was offered parenting classes, but not help in washing the dishes and doing laundry from CYFS, heavily funded by the gov’t. The people who washed the dishes and brought food and fixed the car were the Mennonites. crying even now as I remember this.

  13. Yvette says:

    What? Good article until that last little bit. Therapies are not intended to mitigate hospitalization. The goals of therapies include physical, speech, language, and activities of daily living. The behavioral therapies target behavior in school and on community based instructional activities. The only therapies that are successful in all school and community based instructional environments are those in which the therapeutic methods are consistently integrated into all environments by everyone on the child’s education team. If there is not consistent integration into the home as well, it can’t be expected that those therapies will generalize into the home. One hallmark of autism is the individual’s need to be instructed specifically in the context in which the behavior is to be seen; those with autism don’t necessarily comprehend the idea that what is correct in one context may or may not be correct in another context. There are subtleties involved that are difficult if not impossible for those with autism to grasp. One truth that I have experienced in the decade I have worked with those with autism is that children with autism “don’t generalize.” Or, at least, I am not to assume they generalize skills from one context to another. What is clear to me from the results of the research referenced in this article is that more home-based support is needed for families to successfully respond to the challenges of accommodating a child with autism.

  14. Ann says:

    As a “pushing 70 yo” with two ASD “adult” children still at home I completely agree with this. I am unable to get any respite hours and the few hours a week with an aide are for “working with daughter.” In fact I am unable to use hours when it would “help” me even though I am still working full time.

  15. THD says:

    In response to Sue, and annie…. I am the parent of 2 young adults on the autistic spectrum, in an extended family with other people on the spectrum over 4 generations. We know stress. We know respite. We know know family cannot substitute for professional intervention when needed. We also know there have been relentless cutbacks in therapies, especially those that address pragmatics, social communication, and adaptive functioning. These “attacks” have come in many forms over the years, and this article is an example of one very sneaky way — even if unintentional — to discount the value of therapies by using the wrong outcome measure. The therapies were greatly improved in the ’90s, but the cutbacks made it so there was a shift back to the family to carry out therapy plans that were actually better suited for the therapy environment where professionals could oversee, adjust, and maintain emotional boundaries from the child’s resistance in a way that is NOT possible for family members. Respite is WONDERFUL. Therapies are WONDERFUL. We must not let anyone get away with pitting one against the other. We must not let shoddy conclusions go unchallenged.

  16. Monica says:

    Not puzzling at all. It’s the parents that check the ASD child into the hospital! Those kids don’t check themselves in. Therapies help improve my child’s functioning, but don’t always address behavior issues. For us, ABA has been the most beneficial in behavior issues. Either way, it’s the parents that deal with the unexpected meltdowns. When we have no emotional resources left, we can’t help our little people deal with their meltdowns, so to the hospital we go!

  17. Celest Martin says:

    I’m the parent of an engaging 24-year-old young man with autism. When my son was young, of course there were very stressful times. We were not afforded respite, but worked our way around it, sometimes by renting a room in our home to a college student in exchange for child care. This allowed my then-husband and me to have five or six hours every Sunday to ourselves, and I believe this was extremely beneficial, as it allowed me to have more patience , feel refreshed, etc. At the same time, I knew other parents who were not able to find any relief from care-giving, and resorted to having their son or daughter committed to a psychiatric hospital for a period of time, simply because the parents could no longer cope; the child sensed the parents’ stress, and increasingly acted out to the point where parents felt they could no longer handle the child, and needed a “break.”

    So I would certainly support the efficacy of respite. As for the various therapies, they are only as good as the therapists! In the end, it is the attitude of the parents toward their child which has the greatest effect on that child’s chances of success. This, of course, is true of all children, not just children with autism.

  18. Bobbi Sheahan says:

    I am so very, very glad to see this.
    Raising a child with autism is not supposed to be an endless grind of running from one therapy to another. Our kids and our families need rest, support, gentleness, naps, hugs….
    Therapy has its place, of course, but I think that parents can make the mistake of becoming frantic and sad over something that is, as a friend of mine puts it, a trajectory, not a tragedy.
    Yes, it can be exhausting to learn how to accommodate different needs and to maximize my child’s potential, but she is such a blessing and I love to watch her blossom. That tends to happen more when we have more downtime. We have found that less is more.
    Bless you for publishing this!
    Bobbi Sheahan
    Author, What I Wish I’d Known About Raising a Child With Autism

  19. Lauren Agoratus says:

    More people enter institutional care due to caregiver burnout rather than deterioration of their condition.

  20. Sue Flaherty says:

    My child is very easy and a joy to be around. But my husband and I would still like to go out for an evening, occasionally, just to reconnect. It is VERY difficult to find respite people to “babysit” even for short periods of time.

    Any suggestions/resources on that would be greatly appreciated. I think all parents know they need a break. How to get it is another matter entirely.
    Thank you!

  21. Erin says:

    Therapies and respite are two sides of the same coin. Therapies improve the person’s living skills, abilities, and tools they have at their disposal, while respite helps their family replenish energy. Working on interventions don’t work without rest and resting all the time doesn’t improve that person’s abilities. You need them BOTH. Therapies and respite complement and feed each other. They are equally important in improving the lives of people we love and our own.

  22. Beth says:

    Wow, the last sentence in this article is somewhat disconcerning. ABA therapy changed my son’s life and improved my family’s quality of life. I am forever grateful to the numerous therapists (speech, ot, social skills programs, open minded educators, and doctors) that worked with our family for the past 7 years. I can assure you I have no concerns of the effectiveness of these services. My son was extremely aggressive, a constant screamer, and always frustrated. Today, he is verbal, pleasant, non medicated, & less frustrated. Now, I want to say that during these years I have always found a way to find time for myself and my other son. This has not always been easy, but it was a priority! I knew my personal and financial limits. I took time to educate family members and friends that volunteered to babysit. Many times I would only be able to take 2-4 hours a month due to finances. I TOOK THEM :) Autism is MORE, more patience, more education & training, more open mindedness, more money, more time, and more love. Everyone needs time to themselves to be the best they can be, respite is key, but therapies are an absolute necessity. I believe that respite is important for ALL parents and even MORE so for those parenting children with disabilities. However, please do not discount or minimize therapies that have been proven scientifically to have positive outcomes.

  23. Lisa S Salinas says:

    The amount of therapeutic services given through Medicaid is completely insufficient to even begin to help the child. Each child needs to be assessed physically and a new medical care progrm has be developed by Defeat Autism Now and other physicians. We were able to have our son seen/diagnosed/and properly cared for by a proper physician. His LHP, revealed the need for more testing, evaluation, and the medication given was most of the time, proper nutritional vitamin supplement (and NO, the dr did not see the vitamins), actually from what we learned, we began work in MLM, I suffered from a traumatic brain injury, thus I tried the supplements first and it showed significant help for me! And then it showed significant help for my son. His condition did require medication and while we avoided most medicine to control behavior, he is on small does to help him to remain centered and in control. This is necessary for him to learn. We know what went wrong, I was on Valproic Acid while pregnant, which they considered safe at the time. And we know the amount of mercury he received for his first 4 vaccines. He was 5 weeks early so his first was, not at birth, but BEFORE his due date; and 42x the known safe level for themerisol. Wake up America. The corporations control us

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