In what was originally a three-part series, I have decided to add one more essential part about special needs planning and why it’s especially important during a pandemic. In part one of this series, I discussed why estate planning is of vital importance during this global pandemic. In part two, I explored elder law and planning for long-term care, and in part three, I focused on retirement planning. Today, in part four, I will focus on special needs planning.
Rob Gorski is a full-time single father of three autistic sons: Gavin (20), Elliott (14), and Emmett (11). Not only is this family coping with autism spectrum disorder (ASD), but with multiple very serious physical and emotional health issues. Because of his son Gavin’s compromised immune system, the family has been strictly quarantined inside the house for more than three weeks.
Staying inside with no assistance or support has become the reality for many parents of young special needs kids, similar to the Gorski’s, who have come to rely on home health aides, therapists, coaches and teachers. During a family conversation recorded for ABC News, Gavin Gorski said he is “always trying to find ways to stay relaxed and stay calm,” while 14-year-old Elliot said the “most important” coping mechanism has been sleep. And 11-year-old Emmet Gorski said his advice is to “stick with your parents, like we stick with our dad.”
“I don’t think so much about how to get through it, I just know that my kids are relying on me and I have to do whatever I have to do,” says Rob Gorski.
This Pandemic is Especially Challenging for Those with Special Needs
Recently, health experts and government officials have been stressing the importance of social distancing to fight the coronavirus pandemic. While social distancing has been widely promoted as the best strategy to avoid transmission of COVID-19, that advice may not be realistic for people who care for children and youth with disabilities who may require therapy or assistance with daily tasks.
For instance, some people with special needs need assistance with personal hygiene. Even being asked to wash their hands can be more challenging. For those who live in group homes, workers say it is “not at all” possible to practice social distancing, which the Centers for Disease Control and Prevention describes as maintaining a distance of 6 feet between yourself and others.
Social distancing is just one of the major concerns. Here are other Covid-19 concerns for those with special needs:
- Changes in routine can be difficult for those with ASD. Anyone with ASD likes structure and repetition. For many, doing the same things every day can very therapeutic and when things are changed, it can cause a lot of stress on the person. There can be a level of understanding, but a rigidity in not letting go of what they want to do. Officials encourage parents with special needs children to keep a daily routine to the best of their ability and continue practicing social distancing.
- Parents don’t have the time or the training: It can be challenging to work with a special needs child on schoolwork when you don’t have the training or the time due to your own job. Pradeepan Jeeva, whose 4-year-old son Obi has autism, said he and his wife aren’t able to give their son the amount of care he needs while still doing their job. They worry he’ll lose the progress he gained in school and in therapy. “Without that consistency and routine, we’re so worried as parents he’s going to go backwards.”
- Assistance is being interrupted: Children’s clinical services and other treatments are being disrupted with the closures of schools, medical settings and caregiving agencies.
- Other conditions can weaken their immunity: Children with autism frequently suffer from epilepsy and anxiety disorders due to a weakened immune system. Some other health impairments they may suffer could make them more vulnerable to coronavirus.
Psychologists’ Research Offers Ways to Help Families, Caregivers and Children Cope During the Pandemic
As you can see, parents and caregivers of children and youth with disabilities are facing unique challenges as a result of COVID-19. Research by the American Psychological Association (APA) points to several important ways parents and caregivers of children and youth with disabilities can cope with the challenges created by the COVID-19 pandemic, as follows:
- Check-in with your child’s school, teachers, and therapists about how educational and therapeutic service delivery may change in the coming weeks and months. If schools offer distance-learning opportunities to students without disabilities, the same support should be offered to students with disabilities. Don’t feel pressured to exactly replicate school and therapy at home. With flexibility, you may identify new ways to learn and grow together that would be more difficult in a typical time.
- Check-in with your child’s health-care provider by calling or using telehealth services if available: If your child has a chronic or acute medical condition, talking with the healthcare provider can guide decisions about how to access needed equipment, supplies, medications, etc., and whether it is best to visit a healthcare facility or stay at home.
- Stay connected with others virtually: With many people needing to shelter in place, keep up social ties with others by planning regular times to call family and friends or talk via Skype, FaceTime or Zoom. Seek support from those around you.
- Be kind to yourself: Since previously available respite options may no longer be available, focus on what can help you feel restored. This might mean taking short breaks from the immediate stress of the situation. This might mean spending some time watching Netflix or playing Words with Friends to give yourself a brief mental break.
- Seek assistance: Disability or condition-specific organizations and support groups can provide helpful information and social support. Reach out to local organizations to see if they offer virtual support groups or have active email listservs that send out information and resources.
- Foster a calm environment: In times of change, opportunities to engage in calming behaviors become especially important, so schedule coping and calming activities into a child’s day and consider ways to introduce new calming behaviors.
- Create routines: If previously established routines have been disrupted, create new routines for your child. This can help your child feel more secure and understand what is expected of them. This can also be an important way to introduce new behaviors — such as handwashing or behaviors in line with social distancing — into daily habits.
- Be prepared: While difficult to consider, establish a plan of care for your child and other family members should you become ill. Typical secondary caregivers may be unavailable. Determining your plan prior to needing it provides a sense of security and reassurance at a time fraught with uncertainty.
- Show extra love and understanding: Children with disabilities may internalize feelings that they and/or their care needs are burdensome to their parents. During this stressful and uncertain time in which parents may be simultaneously wearing the hats of employee, teacher and caregiver, this feeling may be heightened. Remind your child of your unconditional love and joy of getting to spend extra time with them.
The following are some helpful resources for special needs caregivers:
- Disability and Health Information for Caregivers from the CDC
- Department of Education Question and answers on Providing Services to Children with Disabilities during the coronavirus disease 2019 Outbreak:
- Administration for Community Living Resources for Older Adults and People with Disabilities
- National School Psychologists Association: Talking to Children About COVID19
- Talking to Kids About Coronavirus with Alternative/Augmentative Downloadable Communication Boards
Planning for a Loved One with Special Needs
If something happened to you and you are taking care of a loved one with special needs, what would happen to that person? Now is an ideal time to get prepared, if you haven’t done so already. If you or a loved one has ASD or some other type of special need, it is wise to consider creating a special needs trust. A special needs trust is an essential tool to protect the financial future of an individual with special needs. Also known as “a supplemental needs trust,” this type of trust preserves eligibility for federal and state benefits by keeping assets out of the name of the person with special needs, while still allowing the trust funds to be used to benefit the person with special needs. Special Needs Trusts fall generally into these main categories:
- Third-Party SNTs where one person creates and funds for the benefit of someone else.
- First-Party SNTs which are created by or for the person with special needs using that person’s own money.
- Pooled trusts are an alternative to setting up your own special needs trust if you can’t come up with a good choice for trustee or if you are only putting a small amount of money into the trust. There are both third-party and first-party pooled trusts.
Special Needs Planning at the Farr Law Firm
If you have a loved one with special needs and you want to ensure your loved one is provided for throughout his or her lifetime, a special needs trust is a wise idea. Most commonly, a third-party special needs trust is done by parents when they do their own estate planning, directing an appropriate share of the parents’ living trust into a special needs trust. When it comes to special needs planning, the attorneys at the Farr Law Firm can guide you through this process. Please contact us to make an appointment for an initial consultation:
About Evan H Farr, CELA, CAP
