Special Needs Families & Covid-19
Special Needs Families in Covid-19 Crisis
The global pandemic of Covid-19 has essentially shifted our entire education system to the internet. This remote learning creates an even greater challenge for the special needs students enrolled in the public and private schools of the USA. In some cases, many special needs families simply can’t afford the additional out of pocket costs that they now have to bear.
Disabled and special needs students often require alternative education and support services. Parents of special needs children are having to make tough decisions as they cope with the responsibilities of healthcare, therapies, and education of their children, causing severe financial problems for many of them.
Jessica Tuman, vice president of Voya Cares Center of Excellence, at Voya Financial, which focuses primarily on the planning for special needs children and their families, said: “Parents have to make decisions about how they are going to fill this gap, and in most cases, they have to pay out of their own pocket for these services.”
Special needs children require different teaching methods for their education and support. During the Covid-19 pandemic, this responsibility has fallen on the shoulders of their parents along with their therapy and healthcare providers.
Dori-Anne Newton from Hazlet, New Jersey, supervised the online classes and therapies of her 11-year-old daughter, Isla, who has Down’s syndrome. Her public school shifted to online education in the spring. Isla is getting extended school services this summer as the school district has offered a free education program for special needs students.
Dori and her husband, Jim, supplemented school services, physical, speech, and occupational therapies along with private tuition for a while and they had to pay these expenses out of their own pocket.
Dori-Ann, who is a freelance makeup artist, stopped working in March because of the coronavirus. She said: “We are now dependent on my husband’s income only. We calculated our budget and had to stop those services.”
Dori and Jim are now thinking of homeschooling their children Isla and Theo (their 9-year-old son with ADHD and dyslexia). But they say that this option can be very expensive for special needs families.
Dori-Anne did some research about homeschooling of their special needs children and said: “It would cost $5,000 – $10,000 for the curriculum for one child and this doesn’t even include their other services. So, we would have to pay separately for their therapies and medication. If you stop the virtual learning program offered by the school district, you have to withdraw from the other services as well.”
Bernard A. Krooks, one of the founders of the Littman Krooks LLP, and ex-president of the Special Needs Alliance (a non-profit organization helping families and parents of special needs children), said: “The school district must provide education and other services to the special needs children through an individualized education program (IEP) mandated by the federal law”.
“Some school districts are now claiming that they are unable to remotely provide the services required for the special needs children.” he further added. “And some schools even demand that students attend the classes in person. The parents of the disabled and special needs children have serious concerns about sending their children back into the school building. These are uncharted waters,” he said.
Tuman, Krooks, and other legal and financial experts propose that the families of special needs or disabled children explore various options such as special savings accounts, workplace benefits, and other resources to help cope with their financial issues.
Health Savings & Flexible Spending Accounts
Workplace benefits can help special needs families save money for therapies and other expenses of their children. A family will be able to save $7,100 pretax in their health savings account, and $2,750 in flexible spending account this year.
“If you have not been enrolled in any of the FSA or HSA, then see if you can open any one of them as they have changed the rules to enable you to open one of these accounts throughout the year 2020,” said Tuman. The IRS has released recently, guidance related to health saving accounts, financial spending accounts, and other cafeteria plans to provide more flexibility to employers and employees during the Covid-19 pandemic.
The ABLE account is another savings option that helps you save even more for special needs children. With the ABLE account, you can save up to $15,000 annually for a beneficiary. The first $100,000 saved in your ABLE account will be free of key government deductions like Supplemental Security Income (SSI), as well as Medicaid.
Lili Vasileff, a certified financial planner and author of Wealth Protection Management in Greenwich, Connecticut said: “The ABLE account is very similar to a “529 college savings plan.” It enables you to withdraw the principal amount, plus earnings, tax free, provided that the money is used to meet the expenses of the disabled child.” This can help special needs families save for future expenses.
If you have any friends, relatives, or any other individuals who are genuinely interested in providing financial support to your disabled child, they can contribute to your ABLE account. If they give the money directly to the disabled person, it can have a negative impact on the child’s eligibility for government benefits because of the $2,000 asset rule.”
The Newton family, who is now completely dependent on Jim’s income, says that saving money for extra services of their children will be really tough.
Dori said: “We do not have any funds or other resources to do it. We are just trying to make it through this really tough educational time.”
Letter of Medical Necessity
There may be some other alternatives to save money for extra expenses. Tuman suggests that some health insurance plans may also cover expenses for therapies for special needs children, like applied behavioral analysis for children with Autism
Tuman advised asking your child’s physician to write a letter of medical necessity as a proof of the services, therapies, and items that you are purchasing and are mandatory for your child’s medical diagnosis, treatment, and medical condition. For example, The IRS may require the physician’s statement for the expenses to be covered by a health savings account or financial spending account.
Private Funding Sources
The list you created for your child’s expenses can be daunting. Addressing this problem, Vasileff said: “Do consider the available private funding resources offering financial support to the special needs families and their children for their treatment, equipment, and more. The “Kaufman Children’s Center” “and the eSpecial Needs” website provide very helpful information to the people searching for private funding sources.”
You can also find expert advocates through national non-profit organizations that represent families with special needs. Such lawyers can help you find other options to meet the particular needs of your family. Voya Cares also provides a list of planning tools and resources for special needs families, caregivers, community, and legal & financial support on its website.
Other Legal & Financial Considerations
Legal and Financial experts advise the families of special needs children to consider the following key points for their planning:
- Draft a “Letter of Intent” including information related to the child’s daily schedule, family, educational history, medical history, and the benefits they receive from the government. Share this letter with the guardians and all the family members.
- Appoint a guardian and add them in your estate plan to supervise the care and finances of your child if you can’t do if by yourself.
- Hire an attorney and a financial advisor with experience in dealing with the cases of special needs families. You can find experienced legal and financial advisors at the Special Needs Alliance, National Association of Personal Financial Advisors, and Financial Planning Association that have expertise in special needs families’ cases.