one's future. Without such planning, we leave our loved ones vulnerable, and create an undue burden for the friends or family who are left to pick up the pieces.
If you use a digital care planning platform, login and make an update. Proactive families frequently do this as often as monthly. Even better, if digital, everyone in your circle of support can access the update instantly, so the whole team will be operating off the same playbook. This can save time and money when reviewing your plans with your lawyers and financial advisors.
Every family that has a loved one with special needs should have a plan in place – it’s not a matter of rich or poor. Our children and loved ones who rely on us during our lifetime, are relying on us to think about the entirety of their lifetime. You’ll rest easier knowing your child is protected, and you may even find that there are
more resources or benefits available to ease your financial concerns, or coordination services that can lighten your workload. A great place to start is with the Academy of Special Needs Planners (specialneedsanswers.com), Special Needs Alliance (specialneedsalliance.org) attorneys with the CELA designation, or Hope Trust (hopetrust.com).
Get started – it’s not hard, not that expensive, and yes, YOU do need a plan!
"You'll rest easier knowing your child is protected, and you may even find that there are more benefits available."
ABOUT THE AUTHOR:
Joshua Fishkind, J.D., MBA is the CEO and a cofounder of Hope Trust, a full-service care planning company dedicated to helping families plan for their loved one with special needs, provide daily care management and support, and administer special needs trusts.
4 ENGAGE A CARE PLANNER WITH CARE COORDINATION SERVICES AND GOVERNMENT BENEFITS EXPERTISE.
A good care plan will review all the medical, legal, social, and financial needs of your loved one, and will be the guiding force for your plan. Understanding the care needs and budget will help determine your financial planning goals, and what type of trust should be created. It will also identify who in your circle of support should be a part of your plan, and in what capacity. Topics to include in your discussion:
- Review of government benefits — is your loved one entitled to more?
- Appropriate long-term housing options
- Employment and daily activities that enrich your child's life
- Medications, daily schedules and the tips and tricks that make life "work"
- Gathering and digitizing key documents such as IEPs, benefits awards letters, estate and financial planning documents, diagnostic results, etc.
- Case coordination services — are there things that you can delegate to an expert?
5 HAVE THE HARD DISCUSSIONS.
Death and taxes are inevitable, and ignoring the topics doesn’t make them go away, it just leaves you unprepared. Talk to your family, your advisors, and your loved one about what will happen in the future. What are your goals, and are they shared with your loved one and your circle of support? Don’t assume that family will just pick up where you left off — ask them! Often family members say what they think you want to hear; dig deeper. Very often it turns out that family members don’t understand what is being asked, how much work you’re doing, and what being a guardian, caregiver, or trustee would mean in practice, or how it would impact their daily life. It is better to figure this out now, while you can plan, than to make an assumption that proves false when you’re gone. Also, really consider everything you do, and if it is reasonable to ask someone else to assume that role.
6 BRING EVERYONE TOGETHER – ANNUALLY.
Congratulations, you’ve put together a comprehensive plan with your legal, financial, and care professionals! Now is the easy part — maintaining it. Please do not leave your documents on the top shelf of your closet to collect dust. Life is dynamic, and we all hope to live a long time. A care plan that gives all the details about school lunch requirements for your 12-year-old isn’t going to be helpful for your 37-years old when you pass in 25 years!
Bring your team together at least once per year. Update all your plans. Talk about benefits, housing, changes in goals, employment, diagnoses, medications, and more.