Part of this formula is just extra attention necessary to attend to their needs. Beyond that, though, there are financial considerations that need to be made.
Fortunately, all hope is not lost. Richard Courtney is president of the Special Needs Alliance, a nationwide nonprofit dedicated to helping people find attorneys specializing in disability law. Courtney, a lawyer in the Jackson, Mississippi area, became interested in this area of the law after one of his daughters was born with cerebral palsy.
Courtney has important tips on how to make sure your child’s needs are provided for now and into the future.
Courtney said the place to start is to determine what your child’s future needs might be.
“For young children, some early intervention programs might be sought to identify the particular abilities and likely disabilities the child will have, so that the parents will have some feel for what kind of resources they may need to seek out,” he said.
Although the exact needs will vary depending on the child, they could include things like various types of therapy, ongoing medical treatments, round-the-clock care or special educational programs.
Once you’ve determined what those future needs might look like, you can begin to put the resources in place to meet those needs.
Costs of care and therapy can be quite high, but there are a few resources that you can take advantage of in order to help fund or defray expenses.
Medicaid coverage is something that should be looked into if you have a disabled child. The program pays for not only medical care and therapy, but also things like special needs day camps and attendants.
Although there are income limits to qualify for Medicaid, Courtney said many states have applied for and been granted Katie Beckett waivers. Katie Beckett’s family wanted her to be able to receive medical treatments at home rather than in the hospital. Signed into law in 1982 by President Ronald Reagan, these waivers and their descendants allow states to extend Medicaid benefits to all disabled children regardless of their parents’ income.
You can be enrolled in both Medicaid and another insurance program at the same time. In this case, Medicaid becomes a payer of last resort, paying for care after other insurance services have already met obligations to pay claims.
Although Medicaid is mandated by the federal government, the program itself is administered by the individual states. You can check out eligibility requirements and the programs available in your state.
If your child is recognized by the government as being disabled or legally blind, they may qualify for supplemental security income (SSI) under a children’s program until they are 18 (22 if they regularly attend school).
In order to determine eligibility, the government relies on doctors, therapists, schools or anyone else that can provide evidence of the child or adult’s level of function.
The amount the child would receive depends on household income as they assume part of those resources would be available to the child.
When a child ages out of the children’s program, their eligibility is reconsidered under standards for adult SSI payments.
The maximum benefit an individual can receive is $733 per month. Some states supplement these amounts.
In addition to the money, Social Security provides a site for people with disabilities looking for jobs in which they can succeed and become financially independent.
There are income limits to SSI. If a person earns more than $1,070 per month, they generally don’t qualify (although the limit is higher if they’re blind). Also, there can’t be over $2,000 in the name of the SSI recipient ($3,000 for eligible couples).
One of the points Courtney made is that there are a number of things not directly related to the child’s disability to consider.
“The primary things that children with disabilities are going to need are the same things everyone else needs: housing, transportation to get to school and doctors’ appointments and things, food, clothing [and] shelter,” Courtney said.
Although having access to Social Security helps, it might work to your child’s advantage to have an all-purpose fund provide for other expenses after SSI is exhausted.
Authorized by Congress in December 2014, ABLE accounts are 529s (like the college savings accounts) that allow the individual with a disability and anyone else who wants to contribute, to save up to $14,000 per year to an account to pay for various expenses including:
- healthcare expenses
- housing (although using your ABLE account for this could lower your SSI payments)
- employment support including job training and assistive technology (more on employment below)
- miscellaneous expenses including legal fees, funeral and burial
The accounts are not subject to federal taxes, although state taxes will be up to individual states. The one drawback is if the beneficiary on the account dies, whatever money is left in the account can be taken by the state’s Medicaid fund to pay its expenses for any payments made by Medicaid after the account was opened. Also, if the account has over $100,000 in it, Social Security will cut off payments. Medicaid isn’t affected.
For more information on ABLE accounts and the types of expenses you can use them for, check out this document from the Muscular Dystrophy Association.
Another option is to set up a trust for your child. This option is very flexible because the money in the trust can be used for almost anything. The drawback is that the cost to set one up may be on the high side. If you hire someone outside your family to manage the money, it can cost at least 1% of the funds in the trust.
Self-Advocacy for Resources
Although this doesn’t apply specifically to finance, I mention it here because this could help you save money as well as getting your child ready for the workforce if that’s in their future.
If a child is identified as having a special need in the classroom, the public school system is required under the Individuals with Disabilities Education Act (IDEA) to make the necessary accommodations to best educate your child. This is most commonly accomplished by getting all the relevant people in a room (parents, teachers, therapists etc.) and putting together an individualized education program (IEP).
While this is great for K-12 education, the process doesn’t exist in college or the workforce. In college, it’s necessary for the student to meet with the school and talk about their needs. They can make arrangements for someone to take notes or mark answers on a test, but it’s the student’s responsibility to make the college aware of any needs.
Similarly, there may not be a need to personally buy equipment to help your son or daughter maintain employment. The federal government requires that employers hire applicants with disabilities that are the best candidate if the accommodation needed for them to do the job is reasonable. This could be something like speech recognition software for someone who has trouble typing or operating a mouse, or a desk that’s the appropriate height for a wheelchair. However, the applicant has to know the types of tools they need to do the job and be able to communicate these needs to the employer.
Focus on the Big Picture
Courtney’s biggest piece of advice was to focus on the big picture and know when to hire professional help.
“As a parent of a child who has grown into an adult with special needs, the one piece of advice I think that is most important is to find a good special needs counselor, like an attorney that specializes in special-needs planning,” Courtney said. “Sit down with that person and talk about your goals for the individual with disabilities – the child or adult – the requirements they have for care or assistance, and then let that person guide you through developing a comprehensive plan that will bring all the financial resources and all of the healthcare resources available together.”
He emphasized that since every situation is different, navigating all the resources available on your own can be difficult. An attorney or financial planner focused on special needs will have the most perspective on what programs are available in your specific case.
Do you have any tips to help parents of special needs children with their finances? Share them with other readers in the comments section.
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