Everything A Guardian Wants You To Know About Planning While You Still Have Time

It can seem overwhelming to plan for the future. This guide features valuable information from a guardian about planning for your child’s future (especially when you are no longer around).

It is often said that parents of special needs children simply cannot die. But we all know that this is not a reality and that there will be a day when we will be gone, and whatever we have planned for and set up for our children will be what guides their lives.

It is a bit of a harsh reality that we all must face. 

We want to help with some of this planning by sharing “Everything a Guardian Wants You to Know…While There is Still Time to Plan.”

This guide will help you navigate the process of preparing your adult child with disabilities for a future without you. 

By addressing crucial areas such as legal matters, financial planning, and building a support network, you can provide peace of mind for yourself and your child.

Let what you do now help calm your fears for “the after.”

And always remember: Planning for your child’s future is ongoing – it cannot be done all in one day, and it will change many times, so review and update it yearly. Be patient, understanding, and flexible. 

By taking these steps, you can empower your adult child with disabilities to live a fulfilling and independent life.

The Importance of Open and Honest Communications with Your Child

• Start Early: Begin having conversations about your child’s future when they are young. This allows them to gradually understand the concept of planning ahead.
• Use Age-Appropriate Language: Tailor your explanations to your child’s understanding. Use simple analogies for younger children. Older children can engage in more detailed discussions.
• Address Fears and Concerns: Be open to your child’s questions and anxieties. Reassure them of your love and support and validate their feelings.
• Encourage Independence: Promote decision-making skills and self-advocacy. Encourage them to express their preferences and needs.

The Need to Build Essential Life Skills

• Daily Living Skills: Work on activities like cooking, cleaning, budgeting, and personal hygiene. Break down tasks into smaller steps to make them more manageable.
• Communication Skills: Practice effective communication with others, including assertiveness and conflict resolution.
• Social Skills: Encourage friendships and social activities. Role-play different social situations to help them navigate interactions.
• Health and Wellness: Teach them about healthy habits, dietary choices, weight management, medication management, and seeking medical attention when needed.

The Importance of Knowing the Legal Piece of Their Future

Guardianship and Conservatorship: If your child needs legal support, consider appointing a trusted guardian or conservator to make decisions on their behalf.

  Steps to Establish Guardianship:

1. Determine Need: Assess your child’s ability to make sound decisions regarding their person (healthcare, living arrangements) and property (finances).
2. Choose a Guardian: Select a responsible and trustworthy individual who understands your child’s needs and is willing to take on the role.
3. Consult an Attorney: Seek legal advice to understand your jurisdiction’s specific requirements and procedures.
4. File a Petition: Submit a formal petition to the probate court outlining the reasons for guardianship and the proposed guardian’s qualifications.
5. Provide Medical Evaluation: Obtain a medical evaluation from a qualified professional confirming your child’s need for guardianship.
6. Court Hearing: Attend a court hearing where the judge will review the evidence and decide.
7. Court Order: The court will issue a formal order appointing the guardian if approved.

• Power of Attorney: Appoint someone you trust to make financial and legal decisions on your child’s behalf.
• Healthcare Proxy: Designate someone to make medical decisions if your child is unable to do so themselves.
• Living Will: Express your child’s wishes regarding end-of-life care.

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Why Financial Planning is Critical

• Benefits and Social Security: Understand the available benefits and how to apply for them. Work with a financial advisor to create a budget and manage finances.
• Accessible Banking: Choose a bank with accessible services and educate your child on banking basics.
• Estate Planning: Create a will and a trust to ensure your child’s financial security and well-being after your passing.

Why Building A Support Network Makes A Difference

• Family and Friends: Involve close family members and friends in your child’s life. Create a support system that can provide assistance and emotional support.
• Community Resources: Research local organizations that offer support services, such as adult day programs, respite care, and vocational training.
• Professional Support: Consider hiring a professional caregiver or support worker to assist with daily tasks and provide companionship.

I hope you can use this information to guide and set plans for your children while you are still here. Tomorrow is not promised, and it is important to get plans set sooner than later.

Helpful Articles

• Guardianship: A Basic Understanding for Parents
• Trust & Estate Planning for Families with a Special Needs Child
• Securing Your Child’s Future: Special Needs Trusts & Summary of Wishes Explained
• “Instruction Manual” for Your Child with Special Needs
• Common Mistakes Parents Make with Their Special Needs Trusts
• Tax Planning for Parents of Children with Autism
• Able Account or Special Needs Trust: How to Decide?

This post originally appeared on our January/Febuary 2025 Magazine