1. Financial Factors

Make a Balance Sheet

*Take an inventory of your assets and liabilities. Do the same for your child if they have any savings or debts. Write it all down.

Get a Handle on Cash Flow

*Identify your expenses and sources of income today and in the future. Do the same for your child while living at home with you and for when they need housing supports.

Get an Assessment

*Find out how much it will cost to provide the services and supports your child will need for his or her lifetime. This will help you set goals.

Protect Your Family

*Have and review your life insurance, long-term disability insurance and long-term care insurance coverage’s for primary caregivers. Make sure medical insurance is in place for all family members.

Save for Your Future

*Build your own financial independence first. Maximize employee benefits for retirement savings.

Save for Your Child’s Future

*It is important to begin saving for the future as soon as possible. But do not establish any savings or investment accounts in your child’s name.

Monitor and Review

*Review your financial plan periodically; especially when there are any changes in your financial, marital status, employment, health, and/or abilities of your child.

Work With Professionals

*Seek out knowledgeable experts in special needs financial planning and tax planning.

2. Government Benefit Factors

Federal v. State Government Benefits

*Know the differences, apply for any and all benefits that your child may be eligible for.

Determine Eligibility for Adult Services

*Know the lead state agency that will provide supports to you child upon turning age 22. Ask about eligibility requirements for services.

Maintain and Protect Eligibility for Benefits

*Even if your child is not currently receiving certain benefits, plan to maintain their eligibility for the future as a safety net.

Contact the Social Security Administration

*When your child approaches age 18 inquire about SSI eligibility through the Social Security site. When a parent dies, becomes disabled or retires, inquire about survivor benefits.

3. Legal Factors

Create a Proper Special Needs Trust

*This estate planning document will allow you to leave an inheritance to your child without jeopardizing his or her government benefits. Choose trustees you trust.

Check Beneficiary Designations

*Check designations on all life insurance, annuities and retirement plan accounts. These designations will override provisions made in your will. Make sure you do not name “children equally” as the primary or contingent beneficiary.

Understand Guardianship and Alternatives

*Full guardianship by parent(s) may or may not be the best option for your child. Explore alternatives to consider prior to their age 18.

Work With a Disability Law Attorney

*Seek out experts in this area of estate planning. Find one in your area at Special Needs Planners or Special Needs Alliance.

4. Family and Support Factors

Communicate Your Vision

*When you ask the people whom you want involved with your child’s life if they are willing to be involved, help them to understand your expectations of their role. No one likes surprises; let them know you have a plan in place.

Complete a Letter of Intent (LOI)
*Help prepare siblings, future guardians, caretakers, trustees and successors with important information about your child; who’s who, their medical information, their likes and dislikes, their routines and other special information that you may be the only one who knows.

Say Thank You! to Generous Grandparents

*When family or friends offer to help by including your child in their gift or estate plans, encourage them to have their advisors speak with your advisors. Their generosity may unintentionally jeopardize your child’s eligibility for government benefits.

Stay Informed

*Connect with family support agencies in your area and sign up for their newsletters, blogs and emails for updated information to keep you knowledgeable and informed.

Include Siblings

*Brothers and sisters share the longest relationship on earth;get them involved, as soon as it is appropriate as they want to know.

5. Emotional Factors

Remove Emotions from the Planning Process

*Work with impartial and unbiased professionals in order to make objective decisions.

Take Time to Understand and Be Patient

*There is a lot to learn and understand; be patient with yourself, your partner, and your family.

Support the Siblings

*Help them to connect with other siblings.