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Most parents take care of their kids until they’re 18 years old and then, hopefully, they’re off on their own.
But for many parents of kids with disabilities, it’s a lifetime commitment and even beyond.
First, I want to be clear, I’m talking about children whose disability or illness require round-the-clock care, have challenges that impede independent living, or struggle with social and economic sustenance.
There are many individuals out there with various disabilities that are living independent and accomplished lives.
Parents of disabled kids face the extra financial and mental challenge of planning for their child’s care their whole lives and must have a plan in place for after they’ve passed on.
They also need to do the care-taking themselves as well.
Finding out your child has a disability or an illness is a soul-crushing and life-altering experience. But it is also a unique, special experience – as exclusive and distinct just like your child.
I want these parents to know:
- Having a disability is hard, but it’s not the end of the world. They can lead happy, unique lives just the way they are – just being kids! They love movies, playing, interacting and so much more.
- Don’t make assumptions about your child’s potential based on a label. People with disabilities have a range of capabilities, just like anyone else.
- Doctors and medical professionals are not “always right”.
- You’re not alone.
Now, for the general public:
- Believing that having a disability is tragic and deserves nothing but pity, sorrow, and shame has no place anywhere – ever. This takes away their humanity and dismisses their accomplishments.
- Don’t assume anything, many disabilities and illnesses are invisible.
- Stop Staring!
- Stop discouraging your kids from asking questions or shooing them away from children with disabilities – this just reinforces the idea that disability is “bad”.
- If a parent seems to be struggling, ask: “How can I help?” or “What do you need?” instead of judging that they’re a bad parent or the kid needs discipline.
- Children with disabilities are not there for your inspiration to feel good about yourself. You want to help, put the camera and hubris away first.
Now that I’ve cleared the air here, let’s look at some financial advice and where to get assistance:
One of the most important places to start is in your budget.
The categories included in most standard budgets include health insurance, college fund, retirement fund, and so on.
When you have a child with a disability, you’ll need to add extra categories and start contributing to them early. The various new categories could be:
- Medical equipment
- Personal Aides
- Therapy (occupational or physical) sessions
- Alternate school
- Specialized transportation
- Group home living expenses
- and so on…
How many categories and how much to dedicate to each one all depends on the scope of the disability of course, but the earlier you start, the more money that’s available.
All these extra expenses are surely going to be a huge strain on your finances but don’t worry, I’m going to show you many resources you can reach out to for more financial support.
When you discover your child’s diagnosis, you should seek out agencies that serve that specific disability and learn everything you can.
These agencies often have various resources that can be provided, such as:
- Classes and Workshops
- Advocacy Services
- Counselling, Legal, Medical Services
- Financial Support Programs
- Resources (equipment vendors, medical providers, financial, etc.)
- Children Programs
- Parent & Family Support Groups
This should be your first stop as these agencies have “been there” and can lead you through any process that you’re new at. Some even have financial support options – such as Easterseals.
Now that you know more about your child’s disability, you then can sign up for various benefits offered by the federal and state governments.
Some of these benefits include:
- Supplemental Security Income (SSI) – SSI is a needs-based, cash-assistance program (similar to welfare) for disabled people of any age in low-income families with limited resources. The family income limit is between $3,065 and $6,009 monthly.
- Medicaid – Many times if a child qualifies for SSI, they’re also enrolled in Medicare. This program pays for a lot of medical coverage and services. Family income limit depends on what state you’re in.
- Social Security Disability Income (SSDI) – Different rules and qualifications than SSI.
- Housing and Urban Development (HUD) – Has grants to help families gain accessible housing, or renovate their existing housing to be accessible.
- State Vocational Rehabilitation (VR) – For when your child is older and provides the transition to adult services, training, education and job readiness, and more.
As a disabled person myself, I have a lot of trepidation towards government services because they’re understaffed and unknowledgeable. Sometimes they will try and push the lowest available provision on to your child, you will need to stick to your guns and insist on the proper services your child needs. Keep very detailed records and receipts of everything for proof – they’ll try and deny claims or demand refund on funds already paid out – I’ve been there and it’s not fun.
This shouldn’t discourage you from applying for services though – just follow their instructions, keep records, and update your caseworker often.
Check out disability.gov for any other programs that may be available for you.
4. Special Needs Trust
One thing that really sucks about government assistance such as SSI and Medicaid are that you’re only allowed to have less than $2,000 in resources or be disqualified.
This makes it extremely hard to save up for your child’s future, especially naming them as a beneficiary in your will, retirement account, or life insurance.
A way to get around this is to have a special needs trust (or Supplemental Trust). This means your assets can be used by a trustee to manage the finances and personal effects of a disabled person. Trusts are governed by state laws and should only be drafted by an attorney familiar with this area of law.
Special needs trusts can be funded in many ways:
- Insurance policy beneficiary
- Cash, Stocks, and other Investments
- Death Benefits from retirement plans
- Inheritance (from parents or other relatives)
- Sale of properties
This way someone else is in charge of the funds and can ensure that your child’s needs are taken care of without losing any government support. Just make sure that the trust — not the child — is named a beneficiary.
Charities are different from Agencies as that they usually only offer monetary or equipment, as opposed to support and resources.
Some examples of various charities are:
- United Healthcare Children’s Foundation – Provides grants to alleviate medical expenses
- Wheels to Walk – Provides equipment that insurance won’t cover
- Different Needz Foundation – Gives away used equipment as well as a grant for medical expenses
- Giving Angels – Provides specialized equipment to children
- The Lions Club
- The Kiwanis Club
Your local agency will have more information on the different charities available and you can also look some up on Charity Navigator.
6. Medicine, Health Care, & Equipment
This area will take a big chunk of your finances if you’re not eligible for government assistance.
Again, your local agency will have resources to help alleviate these costs, such as some parents offering used equipment for sale that their child has outgrown. This is a great place to grab a much-needed upgrade at a much lower cost.
For assistance with medication and health costs, check out these:
- HelpRx’s – Database of medication coupons or get a discount card
- NeedyMeds – For help paying for medications.
- National Association of Free & Charitable Clinics – Free Medical & Dental Clinics
- Children and Youth with Special Health Care Needs (CYSHCN) – Each State has provisions on providing assistance.
- Donated Dental Services – Dental services for disabled done by volunteer dentists.
- Rehab Equipment Exchange – Medical supplies or equipment available.
Lastly, if you’re confused about all the details in the various medical bills you received, you can contact a medical bill advocate who will, for a small fee, go through your bill to make sure you’re not being overcharged.
There are many tax deductions you can claim on your yearly income taxes when you have a child with a disability.
Some deductions include:
- Home modifications
- Medical Expenses
- Lodging (when you need to travel for medical treatment)
- Travel expenses to and from medical appointments
- Caretaker services
So be sure to save all your receipts and instead of paying a professional tax accountant, look for a Volunteer Income Tax Assistance (VITA) program in your area.
8. Websites & Apps
Being a new parent is tough enough as is, and being a parent of a child with a disability compounds the stress and worries tenfold.
You’re bound to have many questions for many different instances – “is this typical for this disability?”, “is she developing okay?”, and so on.
Instead of disturbing your doctor or specialist (and creating more medical bills) for every occurrence, check out Cognoa – a website and app from a health-care company to help access and support your child’s development progress to ease your doubts.
A really useful free app is Baby Connect, which is a valuable tracking and evaluation tool to mark your kid’s developmental milestones, mood, health, immunization, and care routines all in one place. Bring it to doctor’s appointments and therapy sessions to share data so you won’t forget an important occurrence and why.
Then, to help with keeping track of all your care-taking chores CareZone will list all the chores, medication, times, and more for you.
As your child grows you then can download many apps for your child related to their particular disability – mobility, verbal, social, behavioral tracking, and so many more.
Finally, do seek out various Facebook and other social media groups for parents with children that have your child’s special need. Sharing experiences, asking questions, and venting your own frustrations with those who “get it” does wonders for your mind and soul.
These apps and websites will help you financially as they’ll cut down on frequent doctor visits and consultation calls, prevent illness or complications from forgetting a caretaking step, and mental health relief from socializing with other parents.
9. Family Time
Living with a disabled child can have profound effects on the entire family – parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning.
There might be missed recitals and games, no time for extracurricular activities, changed vacation plans because the place isn’t accessible, and so on. That’s why it’s so important to put some time and money aside for each of your other family members.
Create a financial category in your budget for each member of the family, including yourself, for time together that can include meals out, events, shopping, and anything that focuses on that family member’s preferences or talents.
Schedule a time for each person and don’t cancel or be distracted. Focus entirely on you and that other member.
Some activities you can do together that doesn’t cost anything is:
- Do a Library activity
- Going for a walk, a hike, or bike ride
- Read a book together
- Do a craft activity
- Go for a drive
- Visit an attraction
Lastly, understand that your other children will have their own lives, especially after they’ve grown and are out on their own. Too many parents sadly expect the siblings to step in and take care of the disabled family member after they’ve passed.
I’ve witnessed this myself – parents have 2 children with disabilities and 1 that doesn’t. The parents spent their whole lives taking care and “controlling” the 2 children’s’ lives into adulthood, then the parents became ill.
Suddenly the one child is in charge of 2 ill parents and 2 disabled adults. Unfortunately, the parents and 1 disabled sibling passed (at different times). That’s a lot to expect from one person who has a full-time job and their own family to manage as well.
Which is why it’s so important to have a trustee for your child that’s not necessarily a sibling.
Please do not skip this part.
Taking care of yourself is so important! If you’re tired, drained, or overwhelmed you cannot expect to take care of others effectively. Simply put – you cannot pour from an empty cup.
So please ensure you have a self-care routine as part of your everyday life, activities such as:
- Eat healthy – an apple on the run doesn’t count, sit down and have a healthy meal
- Take a time-out during the day just for yourself – read, meditate, write, have a beauty routine, Netflix, go for a walk, etc.
- Practice gratitude – Reflect on the positives on your life and be thankful. Don’t dwell on the negatives.
- Have an exercise routine – A quick and easy exercise routine can rejuvenate you for the day ahead.
Why am I adding this part to an article about financial advice? Because if you don’t take care of yourself – both mentally and physically – it will cost you and your family more in the end when you become exhausted or sick.
Extra expenses when you, the main caretaker, is sick or unable to continue can include:
- Hiring another (or more) caretaker
- Added medical bills
- Babysitting for your other children
- Extra services to “replace you” – food delivery, cleaning service, etc.
This also is important for every member of the family – your partner and your kids – to do as well. Take time off to spend one-on-one with each member of your family.
11. Support System
Research has proved that having a support system in place has many positive benefits, such as higher levels of well-being, better coping skills and a longer and healthier life.
When you have a child with a disability, especially a severe one that requires round-the-clock care, it’s so important to give yourself and your immediate family plenty of breaks.
A support system can include:
- A grandparent taking the other children for the weekend
- A part-time volunteer (or paid) personal aide to take over the caretaking for a period of time every day.
- A parent mentor from a local agency offering their experience and advice
- Relatives paying for services – medical, physical, medication, etc.
- Friends coming to cook or clean
- Friends or family taking over an errand – order your groceries online and have the friend pick them up for you.
A support system can help in so many ways, not just mentally and physically, but can also be financial. Now is truly not the time for pride and you and your family should be open and willing to accept any kind of support offered.
Having a child with a disability occupies a parent’s every thought and every decision. I hope this article eases some of those fears.
Also understand that you’re not alone. Aretha Franklin had a son with a disability and a handwritten letter was found after her death:
“Worrying about what will happen to my son after I die clings to my soul and rears its head when I least expect it. A constant reminder of the relationship I have with motherhood is a world apart from that of my friends. Even between my boys, my responsibilities differ more than I ever imagined or wanted them to.”
Just know that you are not alone.
Here are some more references that may help: