Mental Health
Medicaid Waivers Help Parents of Children with Autism Stay in the Workforce
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.
“I understand these people. I know they are tired of living here. They have had difficulties. They have no one to help them.” – Chen Si
Since the Nanjing Yangtze River Bridge was first built in 1968, an estimated 2,000 people have died from suicide involving the bridge. According to data from 1995-99, in China’s first national survey in 2002, death from suicide accounted for 3.6 percent of the country’s total deaths. During that period of time, 287,000 Chinese people died from suicide every year, putting the average suicide rate at 23 per 100,000 people.
Chen Si, also known as The Angel of Nanjing, has been patrolling this bridge every Saturday for more than 20 years and has managed to save more than 300 people from death by suicide. He is a 52-year-old father from Nanjing, the capital of Jiangsu province of the People’s Republic of China. Following the loss of a close relative to suicide, Chen Si has taken up this cause because someone needs to.
A Long History
The relationship between mental illness and suicide is controversial in China. Those who follow traditional Chinese philosophy are not encouraged to express their feelings, nor are they encouraged to expect their environment to change to suit their needs. Therefore, intense misery and feelings of despair may go unrecognized, and suicidal symptoms are not easily detected by Chinese medical professionals. In fact, many doctors working in rural areas do not understand the symptoms of depression and often receive low salaries, which discourages more doctors from entering the mental-health field.
Gender Differences
According to the World Health Organization (WHO) statistics, China’s suicide rate in the 1990s was 20 per 100,000 people. In the 1990s, female suicides were higher than male suicides by a factor of three. While China remains one of the few countries with a higher suicide rate among women than men, recent data shows that these disparities have evened out. In 2016, suicide rates among Chinese men and women came up almost even at 9.1 per 100,000 men and 10.3 per 100,000 women. Overall, China’s suicide rate in 2016 was 9.7 per 100,000 people, which was among the lowest globally.
A 2002 survey also revealed that 88 percent of females who died from suicide used agricultural pesticides or rat poison. Although China initially eliminated highly toxic pesticides to improve the safety of its farm produce, the elimination also had a substantial impact on the reduction of deaths from suicide among women. Research shows that men tend to attempt suicide through violent means such as hanging, whereas women tend to attempt suicide with medication. Overall, most studies indicate a decline in suicide rates among all gender and regional categories in China. The studies also recommended targeted suicide prevention programs, particularly for people in rural areas.
Shifting Tide
Women’s freedom, urbanization, and decreased access to toxic pesticides are key reasons behind the decline in suicide rates. According to Jing Jun, a professor at Tsinghua University in Beijing, “female independence has saved a lot of women.” The founding of New China in 1949 in combination with the opening-up policy in the late 1970s and the continuous growth of China’s economy has led to more equitable opportunities for women. Additionally, urbanization removed certain social constraints leading to more freedom for women. For instance, escaping an abusive partner or household may be easier in a city than in a small village.
Despite a decline in death by suicide rates in China, this is an area that we should pay more attention to. Chen Si acts as an angel, but he cannot do this work alone. He hopes that officials consider building a net across the Nanjing Yangtze River Bridge to prevent deaths by suicide.
Resources Available
The Crisis Intervention Centre, the first of its kind in China, was established by Nanjing Brain Hospital to provide psychological advice and support to Chinese people. The Centre also has a hotline, which can be reached at 862583712977.
The Lifeline Shanghai at (400) 821 1215 is a free, confidential, and anonymous support service that is open 365 days a year from 10am-10pm GMT+8.
Facebook and other social media platforms also offer many virtual support groups for individuals experiencing hardship. The National Suicide Prevention Lifeline at 1-800-273-8255 is a 27/4, free and confidential resource to support people in distress, prevention, or in an active crisis. Users should utilize the translate function on these web pages to adjust for language barriers, if necessary.
“I don’t know if I did the right thing. Maybe I shouldn’t have.”
Power differentials are present within the helping profession and may cause the helpee to feel inferior to the helper, particularly in a client-therapist relationship. Oftentimes, clients are in a position where they feel reliant on guidance from their therapist. If there is a significant power imbalance, clients may be hesitant to ask questions and unsure of their role in the reciprocal helping relationship.
On a Reddit social media post, a female client with obsessive-compulsive disorder (OCD) posed this question: “Can I ask my therapist about my diagnosis?” The client has been working with her therapist who is a psychiatrist. The relationship between the therapist and client is fairly new. During one of their sessions, the therapist mentioned that the client might be autistic but they were unsure. The client was previously tested as a child, but the results did not confirm autism or autistic traits. Because the therapist has not confirmed the client’s diagnosis, the lack of uncertainty is creating terrible chaos in the client’s head, as she would like to know if she is or is not autistic. The client is thinking about repeating this question in her next session but is unsure whether it would be rude, pointless, or wrong. Unsure whether or not her therapist is capable of diagnosing autism, the client has tried to persuade her therapist into revealing a diagnosis, but the therapist redirected the conversation.
“This is something I’ve brought up with reluctant therapists as well. I understand the reasons they may not want to disclose that info to a client, but at a certain point it’s like if you had to go to the doctor every week to get an MRI and they just told you they’re just concerned with working on your symptoms.” – u/HyaAlphard
Informed Consent
An article on Informed Consent written by Annette Johns discusses how the Canadian Association of Social Workers (CASW) Code of Ethics (2005) defines informed consent as “a voluntary agreement reached by a capable client based on information about foreseeable risks and benefits associated with the agreement.” Social workers have an ethical responsibility to seek informed consent from their clients at the beginning of the therapist-client relationship. Clients also have the right to refuse or withdraw consent and to have an opportunity to ask questions.
It is also important for clients to be engaged in the decision-making processes throughout the duration of the therapist-client relationship. In fact, informed consent and full transparency are integral to the relationship between a client and therapist and ensures the client’s right to self-determination, autonomy, dignity, and confidentiality. Social workers should use clear and understandable language to inform clients of the purpose, risks, limits, and reasonable alternatives to services.
Receiving a Diagnosis
Clients should be a part of the decision about whether to be assessed for a diagnosis. If the client is willing, the therapist has a responsibility to disclose the advantages and disadvantages of receiving a diagnosis. One advantage is that receiving a diagnosis can be comforting to clients who have been struggling with symptoms. Some clients find relief and feelings of validation when they can put a name to it, as well as decreased guilt, shame, and feelings of isolation. Receiving a diagnosis can also open up resources for the client and strengthen the relationship between the therapist and the client. However, clients should also be informed that diagnoses can stick with people, following them to and beyond adulthood even if they were misdiagnosed.
Suggested Questions to Ask
The client should feel comfortable to ask their therapist questions and express their needs throughout the duration of the therapist-client relationship. When the therapist suggests a “working diagnosis,” it should also be understood that the client is the most important member of the diagnostic process and has the right to obtain clarity by asking questions, taking notes, and being actively involved. Although the questions below are based in the medical profession, they are relevant to all clients. Out of seven questions posed by Helene Epstein, here are four relatable key questions:
What kind of test(s) will I have?
It is important for the client to know what kind of tests the therapist plans to administer. There are many different types of tests and ways to identify the source of a client’s concern.
Why do you think I need this test?
It is important for the client to understand why their therapist is even recommending the test in the first place, as not every test is essential, and some may be invasive or expensive. The client has the right to ask whether there’s an alternative, if it is costly, or if the test is necessary.
What do I need to do to prepare for this test?
While not every test requires specific planning, some might. If this is not communicated in advance, the client may have to reschedule.
When will I get the results?
Depending on the test and other extenuating factors, waiting times for results may vary. Clients should consult with their therapist for more details.
Clients have the right to be fully informed and fully engaged. Although asking questions may seem rude or wrong, it is not. It is important for clients to be informed about decisions being made on their behalf.
Start with these questions and see if they help give you the answers you need. It’s important you use your voice in client-therapist relationships and prioritize your needs. At the end of the day, the treatment your seeking is for you, so do what feels right.
At the age of 17, I lost my older brother, David, to suicide. As a gay man in his early 20s, David struggled with mental health conditions and social isolation. His loss affected my family, his friends, and me forever. It was then that I decided to dedicate my life to suicide prevention.
His loss, and the loss of so many others, makes the 2020 data showing that the suicide rate in the United States has increased by 1.4 percent even more upsetting. Michigan’s suicide rate has increased by over 33 percent since 1999, and among young people ages 10 to 24, the rate has climbed by 56 percent since 2007, making it the second leading cause of death for that age group.
Despite these sobering statistics, I’m confident that we can prevent suicide.
In the past couple of years, Michigan has taken great steps toward suicide prevention and mental health promotion. In a past legislative session, Senate Bill 228 established the State Suicide Prevention Commission, and House Bill 4051 established a statewide mental health crisis line. The passage of each of these bills highlights our legislators’ commitment to saving lives – but there is more we can do.
We need a holistic set of public policies that works to promote well-being and ensure safety across all contexts in which our young people live, learn, and play.
For example, in 2019 Sen. Curtis Hertel, Jr. introduced Senate Bill 532 to mandate suicide prevention instruction for K-12 students and professional development training for public school teachers and staff. As of the start of 2020, Michigan was one of only 15 states that encourages such training but does not require it. In comparison, 18 states mandate suicide prevention training but do not specify if it must be annual. Whereas 13 states have mandated annual suicide prevention training for school personnel.
In addition to training, 22 states also mandate comprehensive school policies on implementing suicide prevention education, responding to students in crisis, and handling suicide deaths. Again, Michigan has no such mandated policies.
The American Foundation for Suicide Prevention (AFSP), in partnership with The Trevor Project, the American School Counselor Association, and the National Association of School Psychologists has developed a Model School District Policy on suicide prevention. The document outlines policies and best practices that school districts can follow to protect the health and safety of all students.
Outside of the school, numerous other policies can help save young lives. For example, while federally mandated, Michigan is among a staggering number of states that currently have no laws guaranteeing mental health parity — the assurance that insurance companies will cover mental health care in the same way they cover physical health care.
In addition, 20 states now have laws banning conversion therapy – the practice of counseling or psychotherapy that attempts to change one’s sexual orientation or gender identity. The negative effects of such practices are well documented and include increased suicide risk, decreased self-esteem and well-being, disrupted healthy identity development, and increased social isolation. As it stands, Michigan only partially bans conversion therapy for minors, along with four other states. In total, 20 states ban the practice for minors outright, 3 are still settling the issue in court, and 22 states have no policy or mandate regarding the practice.
As a researcher, advocate, and brother, I know we need policies that are proactive rather than reactive, address multiple contexts, and dismantle the stigma around suicide. We can and must do more to save lives and bring hope to those affected by suicide.
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