Coping With The High Costs Of Raising An Autistic Child
6 Min Read
NEW YORK –
When Linda Merciers son Sam was around two years old, she knew something wasnt right.
Sam was becoming withdrawn, not speaking or playing with other kids, and focused on specific tasks like lining up his toys. Eventually the mystery was solved: He was diagnosed with an Autism Spectrum Disorder, or ASD.
That was the beginning of a very long road, one that has involved significant time, effort – and money, plenty of it. Hundreds of thousands of dollars so far, Mercier estimates, on tutors, therapists and lost wages.
The good news: Sam is now high-functioning, and in many respects a completely normal 13-year-old. The downside: The price tag to get to this point has been massive.
Only a parent of a child with special needs can ever understand the struggles, and the financial commitment, of raising and recovering an autistic child, says Mercier, a business owner from Winnipeg, Canada. Its an endless battle – and an expensive one.
Indeed: A new study in the medical journal JAMA Pediatrics has pegged the total lifetime cost of supporting an individual with an ASD at an astonishing $1.4 million in the United States. If there is also intellectual disability, the total rises even more, to $2.4 million.
Such costs typically include an ongoing mix of special education programs, medical care and lost wages. After all, many parents of autistic children reduce their work hours, or even quit their jobs altogether, to help their child full-time.
Range Of Yearly Expenses For Aba Therapy
A typical family of a child with autism will spend at least $17,000 per year on ABA therapy. Most households spend much more, with some families spending more than $40,000 per year on ABA therapy. The higher costs are related to the location where the services are provided and the number of therapy hours received by the child. A child who is severely impacted by autism may require more hours per week of ABA therapy by a highly-trained, doctoral-level psychologist rather than a masters degree-level psychology apprentice or assistant. Some children may do better if the ABA therapist comes to their home, and this will typically cost more than an office visit would.
Because autism is a disorder on a spectrum, some children will need much more care than others. For instance, children with autism may need specialized daycare services, and these can cost as much as $11,000 per year. Teenagers or adults who cant take care of themselves on their own may need to stay in longer-term care facilities with 24/7 nursing staff. These living arrangements often cost more than $40,000 per year. People who can live on their own but need some assistance may still need to pay around $3000 per year for in-home help.
How Much Does Aba Therapy Cost Per Year
When you complete the most basic research into the cost of ABA therapy in the U.S., the figure of $120 per hour with a board-certified ABA therapist is likely to scare you.
After all, simple maths shows that even a few hours each week could cost you dearly:
- 10 hours per week x $120 = $1,200 per week or $62,400 per year
- 20 hours per week x $120 = $2,400 per week or $124,800 per year
- 40 hours per week x $120 = $4,800 per week or $249,600 per year
Quite frankly, those figures make therapy a challenge for many families. Some families might not be able to afford enough hours each week for an ABA therapist to build a rapport or fully analyze their childs behavioral changes. So, does that mean you should give up? Not at all
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Safety Of Stem Cell Treatments
Because there has been a rapid rise in the number of medical providers who are offering stem cell treatments in recent years, the safety and quality of stem cell procedures can vary dramatically.
The FDA has repeated warned that patients may be vulnerable to stem cell treatments that are illegal and potentially harmful or ineffective. The agency has also sent out dozens of warning letters to providers of stem cell products.
In December 2019, the FDA warned Liveyon Labs Inc. and Liveyon LLC that their stem cell products lack required FDA approval and represent a potential risk to the public health.
The agency has also sent at least 20 letters to manufacturers and health care providers noting that they may be offering unapproved stem cell products.
Today, at least 400 medical providers are offering stem cell treatments, most of whom are based in the U.S. and are not in compliance with FDA standards. Thus, anyone considering stem cell therapy from any tissue or source will benefit from understanding the possible consequences of stem cell therapy.
Costs Of A Stem Cell Transplantation
For the patient, a stem cell transplant involves multiple steps, including:
- neurodegenerative diseases, like Alzheimers disease and dementia
- psoriatic or rheumatoid arthritis
These higher costs reflect the complexity of treating these patients and the fact that multiple treatments are often required.
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Are You Looking For Some Easy Ways To Afford Autism
Affording Autism was birthed from a brain storming session during a budget meeting. It has become a series that looks at the logistics of paying for the things our autistic children require that insurance either doesnt cover at all or doesnt cover enough.
Waiting lists for assistance can be months, even years long. We waited so long in Florida that Logan aged out. There are therapies, respite care, personal hygiene items, as well as sensory items that are needed to help our children function. A family can go into debt trying to help their child navigate their many needs.
We jokingly refer to Logan as our house. You see, we have spent enough on his needs to have purchased a house outright. Ive heard stories of other families emptying out their 401ks and other retirement accounts. Sold their homes and possessions to pay for items that their child or children need. Lets start a revolution of people who find innovative ways to help our children while not breaking the bank at the same time.
How Much Do Stem Cell Injections Cost
These treatments can range from $4000 – $8,000 in the United States. Adipose and Bone Marrow stem cell treatments can be effective for certain orthopedic conditions, but studies have shown that they are not a viable treatment option for chronic widespread inflammation or autoimmune conditions due to a variety of factors including lower cell count and potency. This is what makes expanded cord tissue-derived stem cells so revolutionary.
Allogenic stem cell therapy consists of cells extracted from cord tissue, or âWhartonâs Jellyâ. Umbilical cord tissue can have some of the most powerful, primal mesenchymal stem cells that can be found. Studies have shown that stem cells, at the point of birth are at their peak of potency, unaffected by the aging process or disease. However the administration of culturally expanded cells in the United States is largely not authorized according to FDA sections 351 and 361. Stem cell therapy cost for culturally expanded cells ranges from USD 15,000 – USD 30,000.
Are The More Expensive Ones Actually Nicer
Not necessarily, Osmond says. Shes found that some of the more expensive ones are all sizzle and no steak. Some brands put a lot into the quality and then use a cheap fill that just doesnt work well and give you actual pressure therapy. She urges people to read reviews and find out whats best for them.
Autism Therapies Parents Can Provide In Their Own Home
It’s expensive to care for a child with autism. Even if you have top-notch insurance and a wonderful school district, you’ll pay premium prices for everything from babysitting to summer camp. Therapy can be a costly added expense, especially when some of the best therapists won’t accept insurance.
Fortunately, however, there are many well-established risk-free therapies that parents can provide on their own with relatively little cost in time or money. Even better, therapies provided by parents can be just as effective as those provided by therapists. Best of all, these are therapies that can help parents bond with their children while also building skills. Of course, not every parent wants to providing therapy to an autistic child, but if you’re hoping to save money while bonding with your child it’s well worth a try.
Many parents can get started with these therapies by reading, watching videos, or attending classes online or in person. Other parents are more comfortable working with a trained therapist until they feel comfortable taking the lead. Even if parents do choose to work with a therapist, they can also learn to provide therapy for their child between therapy sessions, thus building their own skills while lowering the cost of therapy.
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Are The Cells Ethically Sourced Viable And Regulated
Stem cell therapy cost can also be associated with the quality of the cells being administered. How the cells are sourced can play a key role in stem cell therapy cost. For example regulations in Mexico and South America are much more lenient than those in the United States, allowing for cells to be acquired at a cheaper cost. However, there is a tradeoff, with less regulation it becomes tough to ensure the safety and viability of the cells. The American Association of Tissue Banks was created for this exact purpose. To regulate donated tissues and heavily screen them for infection and disease. DVC Stem uses umbilical cord tissue-derived cells from their partner lab Vitro Biopharma, who only sources their tissue from AATB certified suppliers of full term, human cord tissue.
So Weighted Blankets Are Mostly Expensive For A Reason
Yeah. Theres a lot of hype around them, and wherever theres hype, theres often high prices. They cost more to make than a regularblanket does and they also claim to offer things that a normal blanket doesnt. And yet, for lots of people, weighted blankets do in fact offer a better night ofsleep. Even though all it really does is weigh them down, people are always willing to part with their money for something that makes them feel rested. When you put it that way, it might even sound like money well spent.
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A Real Example Of Stem Cell Therapy Costs
One patient who shared a stem cell treatment invoice with BioInformant found that the treatment for glycogen storage disease would cost $23,900 through GIOSTAR Mexico.
In contrast, that same patient was quoted $33,000 through Celltex, a U.S.-based company that treats patients in Cancun, Mexico.
Finally, the patient was quoted $10,000from Stem Cell Therapy of Las Vegas and Med Spa, an American clinic.
As demonstrated by these prices, stem cell therapy costs can vary dramatically depending on the experience and quality of the treatment provider.
Guide To A Low Cost Intervention Program
Unfortunately Autism and Asperger’s syndrome do not get the government support that exists for better known disorders and disabilities. This lack of free services can be very frustrating for families unable to afford expensive therapies such as Applied Behavior Analysis. Parents may consider drastic moves such as selling their house because they feel not getting the most expensive therapy is letting their child down. Other parents may be geographically isolated and unable to access therapists and intervention services.
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Costs Your Family Might Face
Every child with ASD is different. Each person has needs, hopes, dreams, wants, and challenges. The best treatment for ASD is individualized and made to help that person succeed in the world. As a result, making blanket statements about costs is challenging. Each child might need something different. But in general, there are expenses that most families of children with autism might expect.
It’s not uncommon for parents of children with autism to face expenses caused by:
- Insurance. It’s critical for children with autism to have robust health care coverage for both their physical and mental health concerns. Families without employer-sponsored health care have coverage options through the Affordable Care Act . Coverage cannot be limited or denied based on preexisting conditions, including autism. You can check with your stateâs exchange regarding coverage possibilities for autism treatment. Premium amounts will vary according to location, plan level, number of people covered, and the ages and tobacco use status of participants.
- Intensive therapy. Insurance coverage should help you to pay for the treatment your child needs to do well in the world. But you may face added expenses, such as deductibles and coinsurance payments. It’s not uncommon for parents to pay up to $25,000 per year for intensive therapy.
Options For Families Paying Out
If a family lives in a state where ABA therapy is not covered by insurance, or they use up their ABA insurance coverage, there are a few options for paying for the services. Families could use a Health Savings Account or Health Reimbursement Account to pay for these expenses and reduce their tax burden. Families paying cash might be able to negotiate lower fees. And some providers may offer financing options, too.
It can be overwhelming to figure out how to pay for ABA therapy, but there are also organizations that can help. Parents uncertain of where to find providers or how to pay for therapy should contact the Behavior Analysis Certification Board. This organization will be able to point families to ABA practitioners near them, and it also can sometimes help families find resources to help cover the costs. The autistic childs pediatrician may also be a great resource. Chances are good that most pediatricians have treated children with autism, and theyre likely to be able to help parents navigate the often-confusing treatment landscape.
Several organizations that support autistic people and parents of children with autism also have resources to help with payment. Some have free guides to help families with financial planning, and many offer advice on obtaining disability benefits for an autistic child. Many of these organizations also can refer families to available grants and other forms of assistance.
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Guide: How To Pay For Autism Therapy Without Insurance
The earlier your child’s autism therapy begins, the better. Treatment can help your child build critical skills that may lead to an independent life.
Insurance often helps to pay for treatment. But what can you do when you don’t have coverage?
If your child is younger than 3 years old, state programs may step in to cover the cost of assessment and treatment. If your child is older than 3, your child’s school may offer some forms of autism treatment.
Insurance coverage is preferable. Families use benefits to pay for treatments that may be unavailable through free programs.
But if you don’t have insurance coverage, there are other options available.
Aba Therapy Covered By Insurance Companies
Insurance-covered ABA therapy is a very common solution, not least because insurance companies are mandated to cover autism treatment in several states.
When you use insurance coverage, you will only be required to pay the agreed deductible. So, if your contract has a $50 deductible, youll need to pay this amount for each session. However if your child received four sessions of three hours each week, the $200 fee is far more affordable than covering the costs from your pocket.
Over a year, though, this equates to $10,000 even if your child receives a two-week break from the sessions. Many state schemes will cover these costs too, though. So, youll either gain a highly discounted solution or an entirely free level of care.
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Can It Be Done At Home
Therapy can also take place in your home. In fact, some children do best with in-home ABA because they feel more comfortable in their usual surroundings. It can also make it easier for them to master certain life skills, such as getting dressed and using the bathroom.
But its best to only attempt ABA at home with the help of a licensed therapist, at least in the beginning. They can help you come up with a program thats tailored to your childs needs.
In addition, recent suggests that ABA therapy provided through telehealth services may be a cost-effective alternative to traditional ABA. All you need is a computer and an internet connection.
Looking for more information about ABA before trying it out? These books are great primers for parents that you can order online:
The Need For Detailed Objective Information
An assessment of your child’s Autism or Asperger’s syndrome is required. This helps in knowing how much can be learnt, what is the best way to learn, what activities are most likely to present problems, what limitations there may be perceptually, and how you can set things up to maximize abilities.
Family members must objectively decide how much time, money and emotional energy they will be able to commit and how long they will be able to do so. This includes such factors as who will provide transportation to activities, supervision in both the home and the community, and what materials will be needed. An organized program requires the effort of more than one individual unless it is undertaken in extremely small and manageable steps.
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