INSPIRING HOPE. POWERING POTENTIAL.™

Empower Employee Caregivers

A day in the life of families caring for a child with special needs.

The following is a summary of key points and excerpts from a webinar. To hear the entire webinar visit http://go.rethinkfirst.com/eec-od.

What will you learn? Angela Nelson: This is meant to give you a deeper knowledge of what life is really like for employees who have a child with a developmental disability. We’ll talk about how it impacts them at home and at work and share some suggestions for ways that employers can help better support these employees.

We’ve found that developmental disabilities and the treatment options and general complexities facing these families can be a rather gray area even for some of the most tenured benefits veterans in the industry.

What is a developmental disability? AN: This information is coming from the CDC and the May Institute.

Developmental disabilities are groups of conditions due to an impairment in one or more of the following: physical abilities, language abilities, learning or behavior abilities that begin during the developmental period.

You’re not necessarily born with a developmental disability. It can happen any time before age 22. It impacts day-to-day functioning and lasts a lifetime. They span all groups. They span across racial, ethnic, educational, and socioeconomic backgrounds.

Let’s talk about a couple of examples. First, an intellectual disability is the most common developmental disability. It’s a deficit in both your intellectual functioning, things like reasoning, learning, problem-solving skills, and your adaptive behavior, which makes up your everyday social and practical skills. This is the term that we now consider for people that were formerly diagnosed with what we called mental retardation – that’s no longer a diagnosis – and they would now be considered to have an intellectual disability.

In addition to that, we have ADHD, autism spectrum disorder, learning disabilities, cerebral palsy, speech and language disorders, Down syndrome, Tourette syndrome, traumatic brain injury (TBI), and Prader-Willi syndrome. This is not an exhaustive list, but just a couple examples.

What is the current rate of developmental disabilities? AN: We know that the prevalence is increasing. The CDC reports that about 1 in 6 children has a developmental disability. This is age birth to 21. In my work here at Rethink, we see families without a diagnosis – there’s no diagnosis requirement to use Rethink – so that tells us it’s more than 1 in 6 if you think about it in terms of those who have general challenges with learning or behavior or socialization because just 1 in 6 have a formal diagnosis.

This graph is just highlighting autism, which we know has spiked from 1 in 68 to 1 in 59. Those data were taken from 2014. However, it just came out recently. We’re now at 1 in 59 in just a couple short years. That’s

Empower Employee CaregiversA day in the life of families caring for a child with special needs.

Angela Nelson, Rethink’s

Executive Director of Family and

Clinical Services, has dedicated

15 years over her career to

supporting individuals with

special needs and those caring

for individuals with special

needs. Angela has experience working in homes and

schools with children, teens, and adults who have

developmental disabilities, as well as their families.

a big jump. It’s important to mention that autism is just one of the developmental disabilities that’s included in the 1 in 6 stat. While our prevalence is increasing, so too are the treatment costs.

What’s the impact to your employees? AN: We know you have employees who have gone through the diagnosis process, are going through it right now, or will be going through it, and it’s a very overwhelming time for parents and caregivers. They are scheduling assessments, they’re having to navigate what special education is all about in the school system, they’re going to doctors, paying for doctors, going on wait lists, and so on.

What supports are available? AN: The good news is there are a lot of supports out there. Applied Behavioral Analysis (ABA) therapy – that’s the gold standard, not just for individuals with autism, but for many other developmental disabilities like ADHD. For example, a lot more doctors are saying your child needs behavioral therapy. You need to go in and start working with a Board Certified Behavior Analyst (BCBA).

ABA is a branch of psychology. It involves working to systematically apply different interventions based on the principles of learning theory, like positive reinforcement, breaking skills down, and teaching them in smaller components. There are hundreds and hundreds of studies to show its efficacy. BCBAs are the folks who oversee these ABA programs.

In addition to ABA therapy, we have speech therapy, occupational therapy, physical therapy, psychotherapy (usually for younger children, psychotherapy would be more along the lines of play therapy and art therapy), and special education services, not necessarily therapies, but all the great accommodations, modifications, goals, and work that those special educators in the school system do to support our kids. Sadly, there are many unestablished treatments, as well.

Although there are a lot of great services out there, there is so much to sift through and so much to sign up for. Parents are often tasked with being the case manager. There isn’t really a handbook on how to care for a child with a developmental disability. There’s a lot of information out there. You’re having to be the liaison among all the providers. You’re being the chauffeur to go to and from doctor’s appointments and therapies. It’s quite a lot.

The National Autism Center has put together what’s called the National Standards Project, which is a collection of established, emerging, and unestablished treatments. They’ve gone through and looked at all

sorts of different interventions currently out there for autism and coded them. If they’re established, that means they had a lot of research backing behind it. Unestablished has very little or no research. We at Rethink educate parents on choosing established treatments that have been known to be backed with a lot of research, so caregivers know that they’re going into something that has more efficacy.

Unfortunately, for parents that are just starting out, they often will take to the internet. I did a Google search just recently on “autism” and I got 185 million hits. It is very overwhelming for parents. There’s a lot of snake oil out there. A lot of people putting testimonials out there saying that there are cures and you should use my treatment. Parents will do anything that they can to support their children, so this is a very difficult part of the diagnosis process, knowing what to do and what’s going work and where we should put all our time and money and attention.

Not only are parents tasked with the extra considerations of having a child with a disability, but there’s a huge task of then securing the therapy and the supports. Sometimes they are scarce. If a parent is fortunate enough to secure funding or perhaps ABA therapy, they still have the next task of figuring out where are they are going to get these services.

There are great agencies across the country and across the world, but many of those agencies, if they’re great and very effective, probably have long wait lists. Many times, parents will be living in rural areas away from a university or agencies. Even in large areas, like Seattle for example, they are struggling with a lack of qualified providers, which are the BCBAs who have the post-masters and post-doctoral level degrees and 1,500 hours of field work experience and supervision. Those are the folks that are qualified to supervise these types of programs.

Sometimes parents will go out-of-network to find people to support their child, and of course then they’re racking up costs. A lot of parents are going through this process right now that you may not realize are within your organization.

How do you determine how many of your employees have children with special needs? AN: There are a number of children who don’t have a diagnosis or will never have a diagnosis and would not show up as a claim code when you run a claims analysis. You can look into your claims data and target those employees, but it would be a very small starting point to give you a sense for who may have a need.

There is also a term used in the community – “falling off the cliff” – as children get to school age, some of those therapies or supports they have access to start to peel back. The medical benefit will often encourage or require the family to access services through the school system. For children on your medical benefit, they’re going to age out of the ability to remain on your medical benefit when they enter their mid-20s or twenty-six. This is where the “falling off the cliff” comes in to play because services really thin out after someone becomes an adult.

The 1 in 6 stat comes from the CDC, which is those who have a diagnosed developmental disability, but we do work with many families who either don’t have a diagnosis yet or never will, so 17% is a conservative starting point.

What about mom and dad? AN: Here’s a look at a timeline summarizing key points throughout the day of a family caring for a child with special needs. (Two additional families are highlighted in the webinar recording. You can view the full recording at http://go.rethinkfirst.com/eec-od)

Maria and Raj: AN: Maria and Raj both work. Maria is part-time at a grocery store. Raj works full-time. They have four children. Their oldest Antonio is 8, and he is diagnosed with ADHD.

They’re waking up bright and early at 5:15 am before their kids get up. That’s really their only opportunity to take care of themselves and grab a shower. Raj works more than an hour away, so he’s left the house by 6:00 am. Maria has four kids that she must get ready before school.

We’re going to highlight Antonio today. He struggles quite a bit with his attention and focus. Maria is really struggling to keep up with him. He’ll sit down for about a minute at a time for his cereal. He runs off and wants to go play with blocks. Getting him dressed is also extremely difficult. Usually, it involves chasing him around. He’ll hide. He often doesn’t want to put his shoes on in the morning, so they’ll usually walk to the bus stop without shoes. The bus driver will help him get his shoes on. They came up with a system: before you get on the bus, you need to put your shoes on. Antonio is off to school.

Fast forward to a couple hours later. On this day, Antonio got into a fight with another student due to some of his impulsivity challenges that he is working through. He would not respond to the teachers. He subsequently needed to get picked up from school. Maria couldn’t pick him up because she was at the doctor with her youngest child who has an ear infection.

Raj left work early with that one-hour commute to go and pick up Antonio. He gives Antonio a timeout for his behavior at school. Antonio then takes his baseball trophy and hurls it at the wall, making a hole. The rest of the afternoon continues in much of the same fashion.

Dinner is also a very difficult time for Maria and Raj’s family. Antonio is a very picky eater. He does not like to eat spaghetti, so he’s throwing it on the ground. There’s a lot of coaxing and encouraging him to come back to the table. They’re cleaning up after him and just trying to get some food into his stomach.

The bedtime routine is also a very difficult time because Antonio requires constant reminders for every step of the process – whether it’s brushing his teeth, bathing, getting on his pajamas – having to give him reminders, having to physically prompt him, and help him to put on his pajamas. All he wants to do is run away and play. The family still has three other children that they also need to work with and get ready for bed.

Antonio continues to get out of his bed. This is another struggle that this family has been working through for quite a long time. He says he’s not tired, so he’ll get out of bed, he’ll get up, he’ll roam around the house, and look for toys to play with. It goes back and forth for about almost two hours until about 9:15 pm when he finally falls asleep.

That’s finally the time that Maria and Raj can say hello to each other, while simultaneously having to clean the house, do their household chores, pay bills, and not to mention write a letter to the parents and the peer that Antonio hurt earlier that day. By 11 pm, they are wiped out. They fall asleep on the couch.

What supports do Maria and Raj need help with? AN: These are not uncommon challenges, and many times these are lifelong challenges that mom and dad are supporting Antonio on. Antonio will then have to learn how to do some self-management strategies as he gets older.

Maria and Raj need help teaching Antonio how to comply with instructions and how to give those instructions in an effective manner such as getting down to his level, making eye contact, and giving him short concrete instructions – “Please clean up the blocks and put them in this bin. Please do so before the timer runs out.” Things like that, which are very concrete.

Also creating visuals for him to be more independent with his routine. It might be a visual of the night routine. It might say #1) brush teeth, #2) get on pajamas, #3) put your blocks in this bin, which equals three bedtime stories. Something that is very concrete for him.

And then integrating positive reinforcement for those behaviors that we want to see continue. Teaching him more appropriate self-management strategies, whether it’s deep breathing or sitting in his beanbag chair to calm down. I know a lot of kids who have the glitter jar, where they’ll turn the jar over and there’s glitter, oil, and water in a jar, and they watch the glitter settle down. And by the time it settles, they feel a little bit calmer, and then they’re able to use their words to express how they feel.

What are some employer considerations? AN: We work with a lot of companies that support their employees and really care about the unique needs of a parent that has a child with a developmental disability.

Flexible work hours and locations

Caregivers are having to cut out of work early or leave work and come back for sometimes unexpected reasons. To be able to, if possible, allow your employees to be a bit more flexible in getting their work done and where they can do it, will have some major impacts that employee.

You’ll be able to retain talent that way. Many parents, women and men, have to leave the workforce because they have to care for a child with special needs or a developmental disability. To be able to get work done at night or on certain days while at home is a huge help.

Many agencies will require parent’s presence during the therapies, and so parents need to be there. If they can work from home while therapy is taking place, that will make them feel that they’re still contributing to the company. They will feel that they’ve accomplished what they need, and that they’re still able to keep up with their team and not let their team down. You’re still getting quality work, and your employee is still feeling that they’re contributing and being an active team member at your company.

Employee resource groups

We’ve talked with a lot of families who are a part of these groups. We’ve talked to a lot of Benefits and HR managers, and they say these groups are easy to put together and to run. A lot of times parents can get camaraderie. They’re able to share resources and share information back and forth.

There are parenting groups. There are parenting for children with special needs groups. There are women’s groups and men’s groups, and so on, and these groups are just wonderful in terms of support. If you can or you’re thinking about it, it’s a great idea.

Creating a culture of checking in

This is a hot topic right now in the news. There’s a lot of discussions about this around suicide, for example. One thing that you can do is just check in. Check in with your colleagues. This goes for really any population, not just the special needs population or caregivers of individuals with disabilities.

Creating and encouraging this type of culture, not only with yourself as a manager, but also for everybody that you oversee and that you employ. Can you facilitate the culture of checking in? “Hey, I know that you had an IEP meeting yesterday. How did that go?” Or, “How’s your child doing? I know you said that he was really struggling with eating, and I know that you were expressing some concern and some stress. You had to go to a couple of different specialists. How’s that going?” That can really mean a lot to a parent. It really takes no effort and it takes no money or financial contributions to create that type of culture.

Employee Assistance Programs

We know a lot of companies do have an EAP benefit. This is vital for a lot of parents. This is probably one of the biggest referrals that I make when I work with parents. “Are you taking advantage of your company’s EAP?”

The mental health services, counseling, financial and legal supports, planning special needs trusts, special education advocacy work, and so on. These are all things in an EAP that caregivers really need in this population.

Self-care benefits

Sleep, nutrition, exercise, meditation – these things oftentimes will fall by the wayside when you have a child with a developmental disability. Children really do require a lot of attention and a lot of different logistics. Sometimes mom and dad’s self-care really take a hit. You want to encourage them and remind them that you care about them.

ABA benefits

This is a lifeline to many families. If you’re able to offer an ABA benefit through your health plan, this is huge. You’re saving your employees thousands and thousands and thousands of dollars a year and headache.

©2018 Rethink Benefits. INSPIRING HOPE. POWERING POTENTIAL.™

Advocacy benefits

Benefits that provide advocacy referrals, outreach, and so on. I can’t tell you how many times I talked with parents who say, “I just need to find a tutor.” Or “My child is struggling with ADHD. They’re not eligible for ABA benefits, so I’m really in the dark. What do I do? Who do I go to?” To be able to provide services where they can have a concierge of some kind. Where they can call and say, “I’m looking for tutoring in my area, something that’s not too expensive.”

Parent training

Parent training and easy-to-implement behavior strategies. Families need support. They need training. They need coaching. They need resources. They need to know evidence-based practices so that they can better support their child’s development.

Empowerment

This comes in many forms, but I think just offering a lot of the options above can really help our parents take control of their mental health and all the family logistics. That’s huge.

Families like Maria and Raj would have a lot to gain by having access to the above resources. It could help them get their arms around what they could be doing and help them feel empowered to be able to better support themselves and in their child.

Rethink Benefits is the industry’s first and only

caregiver support system that offers evidenced-

based training program for families who have

children with learning, social, or behavioral

challenges or developmental disabilities (including

autism, ADHD, etc.). Discover how Rethink fills

medical plan gaps and helps create a culture of

wellness that ultimately drives improved employee

productivity (reduced stress, greater focus, less

absenteeism), greater employee loyalty, and

increased morale.