It is never "too early" to start planning. And it is never "too late" either. However, the earlier you start, the more options you are likely to have. The decisions that are part of futures planning are not only legal and financial decisions but also those that will determine what your child's life will be like when you or other providers of support are no longer available. Planning can help your child live where, and with whom, he or she chooses. It is wise to establish a plan early in your child's life, and to adapt it as his or her needs and capabilities change. Parents of minor children who do not receive government benefits may believe that they do not need to establish a futures plan until their child becomes an adult or becomes entitled to benefits. But futures planning looks at the "big picture" which entails more than finances.

A futures plan requires you to consider your child's life now and envision what you and your child want it to be as he or she gets older. It requires you to ask yourself what you need to do to ensure that important supports will be there for your child to help him or her have the life you both envision. If you have not started early in your child's life, evaluate where you are and start now.

Raising any child to adulthood is full of challenges. For parents of children with disabili-ties, concerns about their sons' and daughters' futures are magnified. Some people with developmental disabilities will have a high degree of independence and others will need one or more advocates looking out for their interests all of their lives. Many people with developmental disabilities need support with some areas of their lives.

It is often difficult for parents to envision the future of their children with disabilities. However, with adequate planning and the right combination of support from a network of family, friends, and the disability service system, your son or daughter can lead a productive, satisfying life. Failing to plan could leave your child in an emergency situation with your hard-earned money not being used the way you intended.

Families in greater numbers than ever before are interested in planning for their minor children or their adult children with disabilities: where they will live, how they will receive needed support, and how the costs will be covered. Comprehensive planning should begin now. Review your plan and change it as your child grows older and circumstances change. As your child gets older it is important to plan with him or her. There are many things families can do to envision a desired future and to take steps to realize their vision.

Having a vision for your child's future (and helping your child develop his or her own vision as he or she gets older) and planning for that future are very important regardless of the type and severity of your child's disability, the make up of your family, or the amount of money you may have to plan with. Some goals may only be accomplished with a certain amount of money, but other wishes can be realized in other ways.

By planning, you can better assure that your child's personal and financial future is what you - and your child - desire and need. Your planning will help maximize your child's independence and dignity and the control he has over his own life. Through this planning, you can picture the involvement of your friends, relatives and service providers and direct any resources you may want to help. And you can picture your child in a community of people, with friends, a job or other meaningful activities and with needs and wishes fulfilled. This can happen with families whose children have significant disabilities, as well as those whose children have milder disabilities.

This information is based on the document Planning Now: A Guide for Parents of Children and Adults with Developmental Disabilities. You can download the document, or use this reference information to help you along the way.

What are Futures Planning and Estate Planning?

"Futures planning" encompasses many things. Typically it refers to envisioning a desired future for yourself, a family member, or a friend and then identifying the people, resources and services needed to make all, or part, of the plan a reality. When planning with your child, the focus can be on the future while you are still living, as well as for after your death.

"Estate planning" generally refers to steps individuals or couples take to direct what will happen to their money and other assets after death and is one aspect of futures planning. Estate planning can help people in all types of financial situations. Most people want to direct how their money or assets will be distributed, minimize taxes, and choose who will care for their minor children. Parents may name people who will provide support for an adult family member with a disability who needs assistance. They may accomplish this by setting up a plan that includes a will, letter of intent, supplemental needs trust and/or other pertinent documents.

When we think of planning for the future, we often think of financial planning. Financial planning is actually the means to an end and should come after you've envisioned a desired future. As a part of the financial planning process, you will identify costs associated with the plan, evaluate your resources, consider what you can accumulate through investments, and identify other resources that might help.

Prior to considering your resources, you need to reflect on the key elements of your child's current lifestyle that are important to maintain in the future, what you and your child want in the future, and what supports will likely be needed to make this happen. Keep in mind that it is natural for plans to change over time.

A good futures plan has a financial component that structures how assets are to be managed and spent on behalf of a person with a disability and names who will have authority to handle the assets. It may outline who will help the individual with a disability make other life decisions, if necessary, such as where he or she will live or what type of health care he or she will receive. It may also name a coordinator who will be available to advocate for the person with a disability, to make sure that appropriate supports and other services are provided, and that those supports are updated as the individual's needs change.

Parents who have a child with a disability may encounter special issues related to their family member's care and support. These issues may range from obtaining public benefits, communication devices, education, employment, housing, and transportation to ensuring such things as favorite foods, recreation and visits with friends.

The most important part of a futures plan is that it is created for each particular family's situation and offers guidelines, but is also flexible enough to be used in the future. It encourages the person with a disability to make decisions as he or she becomes an adult, while providing guidance only as needed. No one knows what the future holds, but it is very empowering and comforting to have thought about the possibilities for your child and to have planned accordingly.

Families should seek an attorney who understands not only estate planning issues but who also is knowledgeable about government benefits and understands, and is sensitive to, the needs of people with disabilities. The futures plan may also require the services of a financial planner, accountant, or life insurance broker to accomplish your goals. It may also depend on family members, friends and other advocates who are familiar with the service system as well as public and private resources available in the community.

Why Plan for the Future?

A futures plan enables parents or others currently providing support to set up alternatives in the event something happens that will make them unable to continue in a supportive role. Generally speaking, we make better and more comprehensive decisions when we plan rather than acting in the midst of a crisis.

The purpose of any plan is to gain some control over what will happen if (or when) some significant event occurs.

Government benefits - both financial assistance and health care benefits - are very important for many people with disabilities. Many parents have thought, or been told, that they should not leave money to their child with a disability or their child will lose public benefits such as Supplemental Security Income (SSI) or Medicaid. On the contrary, the fact that someone is receiving benefits should be an incentive to begin planning. A plan can ensure that a person keeps needed benefits and is able to use the additional assistance from family to purchase items that government benefits do not cover to enrich his or her quality of life.

Lack of planning = Undesirable Outcomes

According to state law, if you die without a will, your children will directly inherit money and other assets. If your child with a disability receives SSI and Medicaid (or could qualify for these benefits when he or she becomes an adult), the following is likely:

1. Your child will lose his benefits and have to use the inheritance for daily living costs and health care. Few inheritances are large enough to cover these costs for long. Te needs you intended to meet with your money go unmet.
2. If your child receives services funded by the Developmental Disabilities Administration (e.g., residential and day/employment services), the inheritance can be claimed by the state to cover the cost of these services until it is depleted. These services typically cost tens of thousands of dollars a year for one person.

Some individuals have disabilities that affect their capacity to manage money or make financial decisions. A futures plan can name someone to manage assets on behalf of a person with a disability. A plan can be very structured or somewhat flexible, but should be made while keeping in mind the physical and emotional needs of your child, as well as his or her assets and government benefits. Parents can leave assets to a trustee acting on behalf of their child with a disability; while preserving their child's eligibility for public benefits. A trust can also own a house, cash from savings or life insurance proceeds, or other property.

A futures or estate plan cannot make the future predictable, but it can establish a framework to deal with the changes and minimize the disruptions and transitions. Setting up a plan now can enable your family to make informed decisions together, taking into consideration all options, rather than having to act under pressure or having a court make those decisions.

Remember that a futures plan may involve many parts that work together. Some parts of the plan may be somewhat informal such as communicating to other family members about your ideals for your child through a "letter of intent." Other parts, such as trusts and wills, are very technical and usually require the assistance of an attorney knowledgeable about disability related issues.

One Plan Does Not Fit All

Each individual and each family is unique. Therefore, each futures plan also will be unique.

Important thoughts while you are setting up a futures plan may include:

• Do you have other children, and if so, what are their current and future needs?
• What assets do you want to leave to your child with a disability and/or to your other children?
• What types of support does your child need?
• How can you maximize your child's independence and ability to enjoy the highest quality of life possible?
• Who else in your child's life should be involved in the planning process?

For each person asking these questions, the answers will vary widely. Your attorney will have certain legal issues to address, but should listen to your goals and expectations and work them into the plan as fully as possible. Similarly, the other professionals you consult should be willing to consider all possible planning options rather than fitting your family situation into a "one-size-fits-all" plan.

Getting Your Plan on Paper

So where do you start? Start with a picture of your present life, looking at your child's abilities and needs. Then think about the future. There are a variety of questions that might be useful in your futures planning. Consider your child's age, the impact of his or her disability on independence and decision-making, and other individual circumstances.

Your plan will also be affected by whether you are planning for the near future or distant future. Some issues might be acted upon now while others are just identified for future attention - either during your lifetime or after your death. If your child is young, it may not be possible, or appropriate, to make specific plans about adulthood issues like employment and support services. However, as your child approaches adulthood, you can develop a more detailed plan that incorporates adult issues.

Remember to involve your child whenever, and however, possible. Ask your child the same questions you ask yourself and incorporate his or her answers. There is a saying many advocates with disabilities use that is worth remembering: "Nothing about me without me."

Whether or not you develop a detailed plan like these, and regardless of how young your child is, you should write a "letter of intent". This familiarizes others with your child and expresses your expectations and wishes for his or her life. Planning early can also help you with decisions about financial planning, wills, trusts, and guardianship.