Life gets expensive fast when you’re a special needs parent.
From therapies to medical equipment to home care, a diagnosis can simultaneously bring relief, hope for better treatment, and a huge financial burden.
Handling these expenses on your own is unrealistic for most American families. Therapy a few times a week can easily add up to thousands of dollars per month. In-home medical care takes that number and multiplies it by ten or more.
Do not lose hope, though. There are programs out there to help, and—depending on where you live—they may be more generous than you’d initially assume.
The number one thing you should do after finding out your child’s diagnosis is check your Medicaid options—even if you currently have health insurance. Some health plans do not cover everything your child will need. This is particularly likely if you work for a larger company, as they are legally able to self-insure while facilitating benefits through a major, third-party health insurance company. As an employee, you likely won’t know the difference until your insurance claims are denied.
In most parts of the country, Medicaid coverage for children with disabilities is more accessible than it ever has been. For a good portion of our history, America institutionalized children with disabilities. Hospital-like settings were where children could arguably receive the best care with the limited community resources of the time.
About 40 years ago, one child’s mother wasn’t having it. That child was Katie Beckett, and her parents fought to get her the care she needed at home. In 1981, Ronald Reagan made moves to allow states to cover services in the home and community under their Medicaid programs. He did this not only because he was moved by Beckett’s story, but also because it turns out it’s a whole lot cheaper to provide services in the home and community.
Many states today take advantage of the Katie Beckett (or TEFRA) rule, granting waivers to children with disabilities so they can get onto Medicaid regardless of parental income. Some other states elect to use HCBS waivers, which do the same thing, but come with caps for the number of enrollees in each allowable disability category.
To learn more about your state’s Medicaid coverage policies, read this guide. It is geared towards parents of autistic children, so access to waivers may differ depending on your child’s disability if you live in an HCBS state. However, if there is a waiver program in place—through TEFRA or HCBS—it is likely there is a pathway for your child, too. Application information for each respective state is included.
Even if you think you won’t qualify, apply. You’ll lose nothing but the time it took you to fill out the application, and you could potentially end up with healthcare coverage for your child’s needs through a state program you were unaware of.
Medicaid coverage will vary from state to state. However, some key benefits you should inquire about include:
In-home medical care.
Behavioral health services.
Modifications to your home.
Nutritional supplements such as Pediasure.
Diapers for children past the age of three.
Respite care—which provides you with a caretaker so you can have some time off to run errands or do whatever you need to do to take care of yourself, too.
Depending on your state, there can be a myriad of additional benefits. Once you have been approved, be sure to read the eligible/ineligible benefits portion of your child’s insurance policy so you’re not unknowingly paying for covered benefits out of your own pocket.
What if I can’t get my child on Medicaid?
Unfortunately, there are still a handful of states which do not allow disabled children onto Medicaid if parental income exceeds the state’s established income limit for Medicaid eligibility. In these situations, you have a couple options, but it will be a greater struggle.
Your most effective option is going to be to move to a state with more generous Medicaid policies if at all possible. It’s not fair, and it’s not ideal. You may have a good network of family and friends who you lean on at home. You may have a job you don’t want to leave, or a house you don’t want to sell.
But if you can get a job in a state with better enrollment policies for children with disabilities, your finances are going to improve, and your child will have coverage for more of the services they need to live a healthy and happy life.
Before moving, be sure to connect with other special needs parents in your desired locale. While coverage may be readily available, some communities simply do not have enough professional staff to provide access to necessary services. For example, Medicaid may cover behavioral health services for your child, but there may not be any behavioral health professionals in the area. If this happens, look at other parts of the state.
Turn to Charities
If you cannot move, charities may be able to help. Look locally first; the local office of Department of Public Welfare may even be able to point you to some resources.
If you can’t find anything locally, you can turn to national and international organizations. Here are a few to get you started:
The First Hand Foundation issues grants worldwide to children who are have medical needs not met by insurance. This can include medical treatment, medical equipment, travel for medical care and vehicle modifications.
Challenged America gives gifts of $500 or less to help ease the financial burden special needs parents face. These gifts are awarded for therapy, assistive devices, sensory items and medical equipment.
The Kiddo’s Clubhouse Foundation issues scholarships valued at $2,500 or less for therapy or therapeutic medical equipment for children without sufficient insurance coverage.
Variety has a slew of programs for special needs children. The Care program issues grants for medical care and equipment. The Freedom program focuses on giving children mobility, and the Future program focuses on communication needs—including devices like iPads that can help non-verbal children communicate.