Hello everyone!
In our last article, Zeke and I discussed the importance of starting to plan for your special needs loved ones now.
If you haven’t had a chance to read it, click here to learn more.
Now the $10,000 question: “How do I get started and what’s the top priority for me to do first?”
Luckily for you, we talk about that in today’s article! 😊
Planning for a child with special needs involves careful consideration of their unique requirements and the resources available to support them.
But planning for your special needs child is also broad, diverse, and sometime confusing.
For example, have you ever wondered:
What exactly IS special needs planning and how different than traditional planning?
How to best plan for my special needs child?
How to setup long-term funding for my special needs child?
What is a special needs trust and why do I need to include in my child’s special needs plan?
To help you answer these questions and many more, Zeke and I have listed 7 things you can start doing TODAY to begin the process of planning for your special needs loved one.
The 7 steps we have listed below will guide you in creating a comprehensive strategy for their future.
Step 1: Understand Your Child’s Needs
The first step in your planning journey is to gain a thorough understanding of your child’s specific needs. and what support services they will need now and possibly in the future.
Those needs can include medical, therapeutic, and social-emotional requirements, as well as educational, vocational, and housing needs.
Start by gathering documentation such as Individualized Education Plans (IEPs), medical records, and any evaluations from therapists, teachers, and healthcare professionals.
Understanding your child’s unique challenges and strengths will help you make informed decisions.
This foundational knowledge is essential for advocating effectively on their behalf.
If you do not know what an IEP is, click here to learn more.
If you want to learn the 7 steps for developing an IEP for your child, click on the link here.
Step 2: Educate Yourself
Trying to decide what areas to educate yourself on in order to best help your child is like trying to navigate the Bermuda Triangle in a dense fog using a hand compass that is going haywire…. It’s virtually unknowable!
Fortunately for you, you have what most people that are lost in the Bermuda Triangle of Life don’t have … us! 😊
To get started, equip yourself with knowledge about special needs laws and benefits available for families in the Individuals with Disabilities Education Act (IDEA).
This is a law that guarantees access to a Free Appropriate Public Education (FAPE) and related services to eligible children with disabilities throughout the nation.
Knowledge of these laws will empower you to navigate the system more effectively and ensure your child receives the services and support they are entitled to.
The next thing to start learning about is IEPs (we discussed this above also), and where the best schools, therapists, and doctors are in your area to help your child as they grow and mature.
In addition, this is the time to start to learn as much as you can about government benefit programs such as Supplemental Security Income (SSI) / Social Security Disability Income (SSDI) , Medicaid, as well as your state’s Medicaid Waiver and Self-Direction of Services programs.
You will also want to learn about what housing subsidies and assisted living options are available as your special needs child matures to adulthood since there is a decent chance your child may need this help at some point in their life.
Each child’s journey is different but this is foundational knowledge that will help your child no matter their circumstances.
Step 3: Build a Support Team
Even if you are a genius savant in all the areas I mentioned above, no one person can know or be able to do everything to help their special needs child.
And that’s ok…
You need to learn the basics, but to truly help your child you need to build a team of professionals to assist you and your children on this journey.
This team may include doctors, therapists, educators, social workers, care managers, lawyers, financial professionals, support groups, and advocates.
A robust support team can offer diverse perspectives and expertise, helping you make well-rounded decisions.
The connections you build and networks you join can also lead to discovering additional resources and opportunities.
How do I know this?… it’s what we did.
During our journey, we knew we could not do this by ourselves even with my wife being a full-time stay-at-home mom.
So after literally beating our heads against the wall for a couple of years, we started building a team around our kids.
We found out the hard way and after much trial and error that the good therapists and psychiatrists who could help our children did not take insurance so we paid those expenses out of our own pocket… A LOT out of our own pocket!
… and it was all worth it!
Why?
Because when you find the right people who can help your kid, you also join their network and resources.
That right there was worth the price of admission! 😊
Want to learn about where to start building your team? Then click here! …. And here!
Step 4: Set Clear Goals
Take time to define both short-term and long-term goals for your child’s development.
Use the SMART criteria (Specific, Measurable, Achievable, Relevant, Time-bound) to create effective goals.
This might include academic achievements, social skills development, or life skills acquisition.
Having clear goals provides direction and motivation, both for you and your child.
It also facilitates communication with your support team about what needs to be accomplished.
At the same time, you should also use the SMART criteria to set realistic goals for yourself around all the things you want to learn and do to help support your child:
- Researching new schools or therapies
- Working on a budget, getting life insurance
- Hiring attorneys to draft wills and trusts
- And more!
Step 5: Create a Financial Plan
Speaking from experience, one of a parent’s biggest concerns is how to ensure your special needs child has the resources to take care of themselves when you are no longer around to help them.
Creating a financial plan not only needs to ensure the things you prioritize today are handled but also that your future priorities are properly taken care of.
A good financial plan begins with a budget: a solid understanding of how much money is coming in to the household every month and where it is going (income and expenses).
Next you will want to build up an emergency fund of cash equal to at least 3 months’ worth of all your expenses, and work on paying down or refinancing your high-interest and short-term debts.
That liquidity is what will save you from going back into a debt spiral with every new and unexpected cost that pops up while trying to care and provide for your special needs child and your family – and costs will pop up!
From there, you will want to set up (and automate) regular monthly contributions into a balanced and diversified set of savings vehicles.
Possible savings vehicles can include checking and savings accounts, investment and brokerage accounts, 401ks/IRAs and other retirement accounts, cash value life insurance, and more.
The goal should be to save at least 15% of your gross income every month but if that target amount seems impossible based on where you are right now then you should try to start with at least some fixed amount or percentage every month and then work on increasing that over time.
Last but not least, you need to make sure that you have enough life insurance to fully replace your income for your family if anything were to happen to you.
You also don’t want to overlook the importance of disability income insurance, long-term care insurance, and liability insurance to protect everything you are working hard to build.
Proper financial planning can alleviate concerns about your child’s future and ensure they have access to necessary resources for lifelong care and support.
If you want more personalized support in setting up a proper financial plan, give Zeke a call today!
Step 6: Develop a Comprehensive Care and Transition Plan
Another part of that worry about making sure your child’s needs are met is building and actually writing down a detailed plan that outlines how to care for your child, educating the next set of caregivers what works and what doesn’t, and creating a transition plan for your child.
Create a detailed care plan that outlines medical, therapeutic, and educational interventions tailored to your child’s needs that can also include strategies for daily living and social skills development.
A comprehensive care plan ensures that all aspects of your child’s life are considered and coordinated. This holistic approach can lead to better outcomes in various domains of development.
A letter of intent is a helpful tool that many special needs families use to communicate all of the care needs and other important information about their child – whether that is for a temporary caregiver like a babysitter or a respite worker, or even a longer term caregiver or a guardian in case something happens to you.
All of us special needs parents have so much critical information about our loved ones in our heads, but nobody else knows any of it unless we write it down somewhere.
The letter of intent gives us a place to do that. (Click here to download a free letter of intent template). https://www.thetimetoplanisnow.com/letter-of-intent
Another thing to create a plan for is life transitions.
As your child approaches key transition points, such as moving from school to adulthood, start planning for the changes ahead.
Explore options for vocational training, supported employment, and independent living.
Transitioning to adulthood can be challenging for individuals with special needs.
Planning ahead can help ensure that your child has the skills and support necessary to thrive in this new phase of life.
Step 7: Ensure Legal Protections
Another sad fact of life with a special needs child is that legal services may be needed at some point in their life.
Not everyone has your child’s best interest at heart and sometime hiring legal services, like ARC, may be needed.
We had a situation with one of our children that had fine motor skills problems and kept failing their math tests.
Even though they could talk me through how to solve the problem step-by-step, they could not write out the solution in the space provided.
Solution? Ask the special ed teachers to provide more space!
Sounds simple, right?… wrong! After several meetings with the head of special education for the school district we had to file a civil suit against the school.
While we won, it was absolutely shocking to me that a simple solution to a basic problem had to get escalated to a court proceeding for resolution.
This also happens all across the country when special needs parents are forced to sue their local school districts to pay for private special education schools that can provide necessary services and supports that the local public schools just are not equipped to offer.
You not only need legal services for potential lawsuits but also estate planning.
Every parent with a child needs a will – not just to direct the disposition of assets but also to provide for successor guardianship of minor children. That need is even greater when children with disabilities are involved, and there are increased legal needs.
Because of strict income and asset limitations to qualify for SSI and Medicaid, it is important that you do not open accounts in your special needs child’s name, and that nobody leaves them any money in their own name – either intentionally or accidentally.
Even just a few thousand dollars in a bank account can be enough for a person with a disability to lose their eligibility for SSI and Medicaid.
That is why unplanned inheritances have to be avoided at all costs.
You can avoid unplanned inheritances by double checking the beneficiary designations on all of your own assets and other accounts.
You want to make sure that your special needs child is never named as a beneficiary for anything.
Any assets you want to leave for their benefit will have to be designated to pass to a properly designed Special Needs Trust or to an ABLE account.
Both of those vehicles are specially designed to hold assets for the benefit of a person with a disability without those assets counting against the limits for government benefits.
Consult with an attorney who specializes in special needs planning to draft essential legal documents that includes wills, powers of attorney, health care proxies, trusts, and guardianship agreements.
Legal protections are critical to safeguarding your child’s future. Proper legal planning ensures that their needs will be met, even when you are no longer able to advocate for them.
Conclusion
Starting your special needs planning journey can be overwhelming but breaking it down into manageable steps can make the process more accessible.
By following these 7 steps, you can create a supportive environment that promotes your child’s growth and independence.
Remember, you are not alone and there have been others who have already started traveling on this journey.
Reach out to professionals and support networks as you navigate this journey.
Your proactive efforts today will pave the way for a secure and fulfilling future for your child.
Live The Life You Love, Want, And Deserve! 😊
Do you need 1 on 1 coaching and guidance?
Schedule a call with my friend Zeke Zimmerman here!
