A Path Through the Uncertainties
For many families, each day presents a new challenge to be met. It may prove difficult to find the time and energy needed to take a step back, analyze their situation and develop a vision for the future.
We have identified Five Factors that must be considered in special needs planning.
- Family & support factors
- Emotional factors
- Financial factors
- Legal factors
- Government benefit factors
Specific factors will become prominent at different points in your planning time horizon. Approaching planning for the different stages of both your and your child's life through the lens of the Five Factors, brings the issues that need to be front and center more clearly into focus.
The Five Factors of special needs planning
Family and Support Factors
Every family has different goals, which evolve around:
Family and Lifestyle values - Families will have different ideas of where their child lives: at home with you for their lifetime or ultimately moving to an independent living situation, your financial situation
The Extended family -when there are no close family members available, a network of neighbors and friends can help provide support both in case of emergency and in day-to-day living.
Siblings - some siblings are more than willing to take on the role of future caregiver for their brother or sister, while others just want to be a brother or sister. If there are adult children who have expressed an interest in helping, get them involved in the planning process early on. Try to include them in meetings with service planners, financial advisors and attorneys.
It is very common for parents to put off planning for the simple reason that thinking about the future is an overwhelming and intimidating road to go down. They are absorbed in meeting the day-to day requirements of living, and understandably find it hard to step out of the every day to think about what will happen when they can no longer care for their child. Consulting qualified, objective professionals can to help you to set aside emotions, and plan for your child's fullest life in the community.
Times of Family Crisis - Many times a crisis will be the catalyst for families to begin to plan. While you will need to take steps to deal with any emergency, this is not the best time to make or change longer-term plans. You will need time to recover from this emotionally charged experience. Professionals suggest you wait, when possible, for 9 to 12 months to make plans and big decisions.
Emotions create passion...and challenges - Passionate parents have for years been the ones to make the difference in the quality of life for their children. You begin with a vision that will incorporate your child's abilities and the resources available to him or her. It may be difficult for couples to have a shared vision for their child; in this case it is important to seek professional counseling to help you agree on how to move forward with planning for your child's future.
With your vision is in place, you may then consider both your financial capacity to work toward achieving this goal and your financial intentions.
Family communication - This is a time to talk with family members to share your ideas and gauge their reactions to how your savings will be used and distributed in the future and to assess their interest in helping with their sibling's future care. Talking about money is not a comfortable thing for many people however, In the case of providing for the lifetime needs of a person with disabilities, it is crucial for siblings to understand and respond to your plans for your resources.
Maximizing resources - One of the key goals of special needs financial planning is to maximize eligibility for government benefits and maximize your own personal resources.
Creating and properly executing legal documents will enable you to direct who will be able to make critical decisions on your behalf and how you want your wealth distributed after your death. These documents may include wills, trusts, health care proxies, powers of attorney and guardianship provisions.
Structuring inheritance - Some parents leave equal shares of their estate to all of their children out of a desire to be fair to each. Parents should consider, however, what is fair is not always equal and what is equal is not aways fair. Completing the special needs financial planning and estate planning processes should help determine the an appropriate distribution for the estate.
Disinheritance and the "Morally Obligated" gift - Some parents do not leave any inheritance to their children with special needs. They leave the total inheritance to the other children, with the hope that they will use a portion of the funds to take care of the individual with special needs. This would be considered a "morally obligated" gift to the recipients. While this may protect the government benefits of the individual with special needs, there are issues for the children who do iherit the assets. For example, the income on the assets would be taxed to the recipient, not the person with special needs. In this case, a special needs trust or other appropriate estate planning strategy should be discussed.
Government Benefits Factors
Is the benefit part of an entitlement program? - Entitlement programs are governed by federal laws and regulations. Proper planning is crucial in protecting eligibility for these benefits. Examples of entitlement programs are Special Education (through the IDEA 2004 Act), Social Security benefits, and Medicaid.
Advocate for your child to receive non-entitlement services and supports - Non- entitlement benefits are appropriated by state governments and might include residential, employment and vocational supports.
BRING IT ALL TOGETHER IN YOUR LETTER OF INTENT
Your LOI will provide all the members of your Team, whether they are a legal guardian, sibling/family member, friend, community member, trustee, organization or professional, with first-hand knowledge of how to best care for your child.
If you also have the ability to access government benefits to be the adult family care provider under Medicaid provisions, you will not be able to be your child’s guardian. Careful consideration should be given when choosing the parent to serve as guardian while the other parent serves as the Medicaid provider.