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Mental Health

Medicaid Waivers Help Parents of Children with Autism Stay in the Workforce

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PENNSYLVANIA— Medicaid waivers that improve access to home and community-based services for children with autism also help their parents keep their jobs, according to research from Penn State College of Medicine and collaborators.

Previous research found that families of children with autism spectrum disorder experience more challenges obtaining child care and other services compared to families of children with other special needs. Medicaid waivers that target children with autism spectrum disorder help families obtain expensive services they may not have otherwise been able to afford.

Parents of children with autism are also encouraged to commit significant time to participating in their child’s treatment.

“When you’re spending all that time just trying to help your child, there’s less time for work,” said Douglas L. Leslie, professor of public health sciences and psychiatry, Penn State College of Medicine.

When these two factors are combined, the reality is that one parent often significantly reduces their work hours or stops working altogether, increasing financial stress on families that may already be struggling to pay for costly services.

Leslie’s team, along with collaborators at the Perelman School of Medicine, University of Pennsylvania and the RAND Corporation, set out to determine if Medicaid waivers affected parental employment in families of children with autism. The study appears today (Feb. 6) Health Affairs.

Historically, private health insurers have not covered services for children with autism, Leslie said, putting the onus on school systems. That help can come too late, because research shows that children with autism benefit from interventions that begin before school-age.

“There’s been a lot of policy work over the last decade or so to try and improve insurance coverage for kids with autism,” he said. “One of the main mechanisms they’ve tried to do this through is Medicaid waivers.”

Many states have introduced home and community-based services waivers that expand eligibility for Medicaid-reimbursed services and provide services that are not covered under the standard Medicaid benefit.

“We’ve done some research looking at the effects of these waivers on things like access to care and unmet needs, and we thought it would be useful to see whether they’ve had an impact on parent’s labor market decisions,” Leslie said.

Leslie and his collaborators used information from a nationally representative survey as well as Medicaid waiver data to determine how waivers impacted parental employment from 2005-2006 and 2009-2010.

They found that waivers were effective at allowing parents to remain in the work force. When cost limits and enrollment limits for waivers were raised—giving more families access to more services—the likelihood that a parent had to leave the workforce also decreased.

Characteristics of waivers, such as how much can be spent per child participating in the waiver and how many families can receive services under the waivers, differ from state to state. In the study, the characteristics of a state’s waiver program determined who was helped by that program.

Waiver programs that increased cost limits—making waivers more generous and putting more services into homes—helped the most in lower-income households.

Waiver programs that increased enrollment limits—allowing more families to receive benefits—made the biggest difference in higher-income households that would not otherwise have qualified for Medicaid services.

“Characteristics of the waivers matter,” Leslie said.

He noted that although waivers can help parents of children with autism stay afloat financially, keeping these parents in the workforce goes beyond monetary considerations.

“Caring for a child with autism is difficult,” Leslie said. “Having an outlet through a job can be very beneficial to the parent’s mental wellbeing. It gets them out into the community.”

Leslie hopes his findings will provide more information to policy makers who hold the purse strings for assistance programs such as home and community-based Medicaid waivers.

“The policy landscape with respect to autism services is very much in flux right now, especially with talk of healthcare reform potentially being reversed,” Leslie said. “I think we need as much information out there as we can get about the benefits of some of these programs so that policy makers can be informed about which policies work and how we can ensure that these vulnerable populations can remain protected as we continue to think about healthcare reform.”

Leslie is continuing to research how waivers affect families and children with autism. He is currently investigating whether waivers are effective at getting more children with autism into evidence-based care and if they reduce problematic outcomes, such as hospital admissions and emergency department visits.

Other researchers on this study were Khaled Iskandarani, research data analyst, Diana Velott, senior instructor and Edeanya Agbese, research project manager, Department of Public Health Sciences Penn State College of Medicine; Bradley D. Stein, RAND Corporation in Pittsburgh, Pennsylvania; Andrew W. Dick, RAND Corporation in Boston, Massachusetts; and David S. Mandell, Perelman School of Medicine, University of Pennsylvania.

Social Work Helper is a news, information, resources, and entertainment website related to social good, social work, and social justice. To submit news and press releases email [email protected]

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Education

Discussing Current Events with Students and Children: If, When, and How?

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Photo Credit: @Reuters

The unfortunate reality for children growing up right now is the prevalence of senseless tragedies. I myself, even as a grown adult, struggle time and time again to make sense of the catastrophic violence that pervades our day-to-day. For my students, I cannot fathom the panicked bewilderment and anxious uncertainties that events such as the Las Vegas attack bring to their frightened, yet curious, minds.

During these formative years, how can we mediate the thin line between informing and frightening our students and children? If we decide that information is power, how do we present such heart-rending topics to young people in a way that equips them to do better for the world? Conversely, if we instead choose to shelter our innocent young people by preserving their naïveté, how can we expect to bring up the next generation to be culturally responsive and informed citizens?

When considering conversations with young people involving tragic current events, such as this week’s Las Vegas mass shooting, adults must be extremely cautious. From the educator’s perspective, I am personally conflicted about my exact role as the adult in the classroom when it comes to conversations of a sensitive nature. Even as a middle school teacher, where my students assert themselves as “informed” or “aware” community members, I find it irresponsible of me to take on the role of informant for other people’s children.

Yes, our students are privy to infinite amounts of and avenues for any and all information, thanks in great part to the 1:1 ratio of school-aged children to smartphones. However, I firmly believe that the family (parents and guardians) know that child best. Therefore, as a teacher, my obligation begins and ends with parental consent. I can, and have, encouraged curious students to speak specifically with their parents about current events and the questions they have regarding those events.

Additionally, as an English teacher, I have provided students with criteria for credible sources, smart searches, and strategies to detect bias and objectivity. But that is where my responsibility ends. This is not because I don’t want to hear their opinions or thoughts on the world’s happenings, but rather because it is not my place to open such an emotional or sensitive topic up to discussion.

Suggestions for parents regarding if, when, and how to broach these types of discussions with your children vary from family to family. Obviously, you know your children better than anyone else. Parents are also in control of the extent of info to which children are exposed. Parents are the gatekeepers of information, charged with filtering, limiting, and explaining the events that you deem appropriate for your children.

If families decide to discuss emotionally-charged current events, such as terrorism or mass acts of violence with their school-aged children, parents should consider multiple factors, including age, social and emotional maturity, and peer influence. Let your children do the talking first. Take the temperature of their background knowledge on the topic before you begin.

Ask if they have heard or seen anything about the specific news story. It is likely that, if your child has a smartphone, she has some level of prior knowledge. Between social media and other communicative platforms, preteens and teenagers are presented with a deluge of news stories, photos, and videos.

Once you’ve gauged their level of prior knowledge, plan to direct the conversation with the goal to inform on a broad scope—do not necessarily delve into specific details, as details rarely serve to comfort or answer questions. A curious teen will inevitably stumble upon more details, but remind your teen to check the validity of the source before forming opinions or drawing conclusions.

Furthermore, be prepared to some answer questions, while leaving other questions unanswered. Especially with unanswerable questions like “how?” it is more than okay to respond with “I don’t know” or “we may never know.” Find some security in the fact that a senseless act will never make sense—and share that important realization with your teen.

Finally, encourage your teen to focus on the heroic deeds of bystanders, first responders, survivors, etc. Tragedies cannot be explained or reconciled, but the focus of the aftermath should always center on taking measures to lift up, help out, and affect change for the better. Always!

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Mental Health

APA Offers Resources for Coping with Mass Shootings, Understanding Gun Violence

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Constant news reports about the shooting in Las Vegas can cause stress and anxiety for people, leaving them with questions about the causes of and solutions to gun violence. Resources on the American Psychological Association’s website can help people with both issues.

One APA resource offers tips for managing feelings of distress in the aftermath of a shooting. “You may be struggling to understand how a shooting could occur and why such a terrible thing would happen. There may never be satisfactory answers to these questions,” it says. “Meanwhile, you may wonder how to go on living your daily life. You can strengthen your resilience – the ability to adapt well in the face of adversity – in the days and weeks ahead.”

Talking to children about the shooting isn’t easy but parents or teachers shouldn’t completely shield them from violence or tragedies. APA offers a series of tips to parents and other caregivers on how to guide the conversation in a proactive and supportive way. “The conversation may not seem easy, but taking a proactive stance, discussing difficult events in age-appropriate language can help a child feel safer and more secure,” according to the resource available in the APA Help Center.

Parents should also watch for signs of stress, fear or anxiety.

For those who feel too overwhelmed to use the tips provided, APA suggests consulting a psychologist or other mental health professional.

“Turning to someone for guidance may help you strengthen your resilience and persevere through difficult times,” it says.

There is no single personality profile that can reliably predict who will use a gun in a violent act, according to a report issued by the APA in December 2013 entitled Gun Violence: Prediction, Prevention, and Policy. There is, however, psychological research that has helped develop evidence-based programs that can prevent violence through primary and secondary interventions.

Written by a task force composed of psychologists and other researchers, the report synthesized the available science on the complex underpinnings of gun violence, from gender and culture to gun policies and prevention strategies.

“The skills and knowledge of psychologists are needed to develop and evaluate programs and settings in schools, workplaces, prisons, neighborhoods, clinics, and other relevant contexts that aim to change gendered expectations for males that emphasize self-sufficiency, toughness and violence, including gun violence,” according to the report.

Gun violence is estimated to cost hundreds of billions of dollars a year in medical, legal and other expenses, not to mention the psychological toll. That is why the government needs to approach it as a public health problem, according to APA acting Executive Director for Public Interest Clinton Anderson, PhD, writing in a blog post entitled No Silver Bullet: Why We Need Research on Gun Violence Prevention.

“Some have argued that we need to focus on policies that prosecute criminals and prevent those individuals who have been found to be a danger to themselves or others from obtaining a firearm,” wrote Anderson. “While these policies have merit, they are clearly not fully effective, and do not address the roots of violence in our society.”

No one policy will prevent gun violence, writes Anderson. “It will take a multi-faceted approach. Funding research that explores these horrific, impulsive acts can help us all inform and adapt our policy approach.”

In another blog post, clinical psychologist Joel Dvoskin, PhD, warned against unfairly stigmatizing the mentally ill by immediately jumping to the conclusion that most shooters have a mental illness.

“Too often, even the most well-intentioned among us believe that most mass shootings are carried out by those with untreated mental illness,” he wrote. “What the perpetrators seem to have in common is the experience of extreme situational crisis.”

Additional resources:

Talking to Kids When They Need Help

7 Ways to Talk to Children and Youth about the Shootings in Orlando

Helping Children Manage Distress in the Aftermath of a Shooting

How Much News Coverage is OK for Children?

Gun Violence Prevention

APA Initiatives to Prevent Gun Violence

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Emergency Management

Rescue to Recovery Stages in a Red Cross Disaster Deployment

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Roy was my partner for most of our deployment with Red Cross on the Disaster Mental Health Team in Texas. We spent many hours on the road mostly on our own, with the exception of “ride to the office” or “back to the shelter” caravans, which could be quite crowded as there were few available cars to ferry us all from the staff shelter to Headquarters for the day.

Conversations stayed rooted mostly in the present, even with kids occasionally Face-timing us in the car when a signal would pop up. I know that he’s been a social worker since 1970 and that he has been married nearly as long. Getting to know each other on a disaster mental health deployment is a different way of knowing someone, but knowing them well regardless. Similar relationships are built with the people you sleep a couple of feet from in the staff shelter.

Roy: “Wasn’t there a band people used to like called the Dead Heads? People liked them but I think they’re dead.”

Roy, In response to a question about breakfast: “Right I’ll give you another rotten orange in the morning.

Kristie: “No thank you; that coffee was sufficient.”

Roy, just go ahead and get in the wrong lane again for this right turn.” (Texas “turnarounds” can be a nightmare).

There was the normalcy of the city center recovering, demonstrated through open shops and Home Depot’s parking lot was nearly at capacity. Starbucks opened, there was a carafe in HQ for one of the lucky teams.

Vulnerability and exploitation were visible not far from the city center. Compounding issues plague those who struggled prior to the disaster. Living paycheck to paycheck when there is suddenly no paycheck creates a domino effect of financial disaster. You can only call the companies to beg for mercy if your phone works, if there are enough bars available to connect you. The smell is rising in neighborhoods, and the question, “What is that smell?” was more frequent today. Mold grows rapidly, and you can smell it from the street.  Weeks have passed since the initial disaster, but it is just beginning to unfold for many people do not have flood insurance.

I ended up making a call to the Attorney General’s office regarding landlords who are refusing to remediate damage and demanding rent from those who cannot pay (or live in their home), with the threat of their things being sent to the dumpster. The police were empathetic but said that it’s a civil issue and in a disaster needs to go to the AGs office. So the wet carpet stays with children living inside, and they lack healthy food- maintaining on what looks like a vending machine diet.

There are contractor company scams that further exploit the exploited, and many workers are being brought in from surrounding areas without protective gear (notable lack of face masks) and clearly without reasonable hours or meal contracts.

On the other end of helplessness and anger, I felt in awe of all of the volunteers and what they do. They respond at the crack of dawn to Headquarters to work with a team using colored post it’s on the wall to map progress and hot spots for the day. Knowing that it’s likely that at the end of the day, they will have gotten sidetracked from the need that was directly in front of them, feeling regret for not making it back to the places they know are in desperate need but are now blocked by factors beyond their control.

Headquarters experienced an evacuation- someone screamed, “Get out! Get out of the building!” It turned out to be some off-gassing cones, but everyone went right back to work outside while standing outside the building waiting for clearance entirely unfazed.

Volunteers will talk it out with each other back at the shelter late at night, eating cold leftovers from the ERV (feeding) vehicles. Informal meetings run from their cots which will make a difference the next day in how resources are allocated because drivers are sleeping next to mental health, nurses, and those doing communications assessments. If you end up both eating and securing a space in line at the shower trailer behind the civic center before it’s too late, it’s something of a miracle. With a lot of contamination and illness going around, it’s best to just throw away the shoes on your way out.

As for the people we served, we realized the depth of desperation that is held for those in areas without good water. Your clothes were washed away or were contaminated, and even if you could wash them, you can’t because your washer and dryer is flooded (one family had some kind of snakes in theirs) as is the laundry mat down the road.

We brought restaurant workers wearing their last items of clothing and shoes serving people in the only community restaurant to open back up in Port Arthur in a certain radius, knowing that those clothes too, would soon be dirty. So what then? How long will this all take? While you may see signs of recovery in the city center, it’s clear that this is going to take so much longer for others, and the rural areas are barely touched by “helpers”.

The depth of this disaster isn’t something that we are used to covering, Katrina taught us a few things that are applicable, but each disaster is its own, and this scale is unimaginable. Puerto Rico is now unfolding as we watch on our screens, in some sort of mass denial of scale.

Most of us can sit comfortably behind our devices and all caps “GET TRUCK DRIVERS!” and while I can personally imagine the barriers that they have in distribution as we just experienced them in Harvey, you just can’t know unless you’re there and are using all of your five senses.

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