Every family situation is unique. Understanding the personal factors of your family and support network will make a difference in how you approach the planning process. Every family has different goals that evolve around the following:
- Family and Lifestyle values
- Immediate and Extended family involvement – brothers, sisters, aunts, uncles, grandparents, friends and neighbors
- Sibling considerations - ages, involvement, abilities, interests
- Careers – one income earner vs. two incomes
Family and Lifestyle Values
Each family’s values of money and desired lifestyle differ. The goals and dreams that you have for your child with special needs may differ from the goals and dreams of other parentsothers in many ways. For example, you may feel that you want your child to live with you throughout your lifetime, or that you may want him/her to be as independent as possible. The determination of your child living at home with you or ultimately moving to an independent living situation, has significant impact on determining your long term financial planning needs.
Some families may plan on relying solely on the government to provide their child’s lifetime needs. This may be because they do not have any additional money to provide for the child and the care that is provided by the government is the most appropriate. If this is the plan, the primary planning focus should be on protecting the child’s eligibility for government benefits such as SSI, SSDI, etc. throughout their lifetime. The secondary planning focus should be to save whatever is possible to provide at least a minimal supplement. Because people are vulnerable to an ever changing political environment, it is important to establish a safety net that goes beyond the baseline of support that is provided by the government.
Even if the family feels that the government is responsible for their child’s care, it does not mean that the government WILL do all that they are socially responsible to do. In fact, it may be that the government will stop paying for services or benefits that your child may currently be receiving such as dental care, prescription drugs, podiatry care, and other services. In fact, recently the government discontinued issuing new funding subsidies for low-income rental housing programs throughout the country. These rental subsidies were a popular tool in providing government resources for individuals with disabilities to pay for their rent. Budgets are voted on every year. This makes legislative advocacy essential to maintain government services and supports.
At the very least, parents should plan to properly leave enough money at their death so that someone could be hired to provide oversight as a guardian or an advocate, while maintaining the child’s eligibility for government benefits. Do not underestimate the time, advocacy and real dollars that you, as a parent, provide. Asking another to assume your role or a portion of it must be accompanied by the financial assistance required to make it possible. It is a lot to ask another child or friend to assume the role of the parent without providing financial assistance or guidance. In fact, unless you leave enough money to make it possible for them to help, they may not be able to do so.
On the other hand, some families feel that they do not want government assistance or interference. They have the financial resources to provide for the lifestyle that they envision for their child without the dependence of government funding. There are a variety of private pay residential models available throughout the country – as well as in-home assistance available to allow your child to continue to live at home with the family. The child may be a very viable member of the daily activities of the family.
Family customs, traditions and values will also guide you in the planning process. If you have family members close by and everyone takes care of one another, or you live in a multi-family house or community with others to share the care taking, you may not have a vision of your child living separately and would not plan for that. How your family celebrates holidays and birthdays may be a very important issue to consider. Continuing with family traditions – birthday cakes, Christmas or Hanukah presents, special foods and other customs may be important to you. Attending religious services and who will bring your child is often a consideration. Making certain that travel arrangements can be made and afforded for siblings or relatives to be together on holiday’s means a lot to some families. With families often living in different cities, it may be necessary to hire a staff person to travel with the child to visit his/her brother or sister for the holidays. Alternately, a sibling may not be able to afford the expenses of traveling to come home for the holidays. Providing for these supplemental expenses may make a significant difference in allowing your family to stay together for special occasions. Your family values and traditions will be able to continue as best as possible if provided for in your planning.
In our family tradition, you do not leave home until you are married. My sister Diane has Down syndrome. She has no plans of getting married so she still lives at home. She is able to help our elderly mother with the household chores and is the primary reason why my mother can still be at home. They help each other. At this point, we haven’t even talked about any plans for when my mother passes on and where Diane will live. --Diane’s sister
The Extended Family
In the event that there are no immediate family members available, a network of close friends can help provide support. Having close family and friends is very important in cases where you need additional assistance to cover in the event of emergencies. Having a close network of friends and neighbors can be a valuable resource in the event of an emergency. In the event that there is limited family, this not only impacts the emotional needs, but the financial needs of having to pay for supports.
We do not have any family in this country. If it were not for the kindness of a few special teachers and friends who have become a part of our son’s life, our daughter would be totally alone in caring for her brother. These special people are with us for holidays and birthdays and have become such an important part of our family. Now we share their children as our own extended family. -- David’s mother
If you have no close friends or family involved in the day to day activities of your life, it is very important to document the wants, needs, likes and dislikes as well as your vision for your child. Without something in writing, it burdens a potential future caretaker with learning the system that you took so long to learn. In addition, it puts your child at a great disadvantage and potentially can set him/her back in years of their development. This is why the Letter of Intent is such an important tool to use.
Parents should make a point to complete the Letter of Intent (see separate chapter) to document the important aspects of your child’s life. Share it with the future caretakers today and make it a living document. Don’t just leave it for others to figure out after you are gone.
It may be difficult to talk about the time when mom or dad will not be around to care for their child. Some children may not want to be involved with the future caretaking responsibilities of their brother or sister. Others are more than willing to do so in some capacity or another. Sometimes the roles of guardian, trustee, or social director are defined by the nature of the family relationship. And then sometimes a brother or sister wants to just be a brother or sister. It is critical that parents communicate their vision and their expectations to all of their children before they die or before the siblings are required to assume this role.
If there are adult children who have expressed an interest in helping, it is important to get them involved in the planning process early on. Try to include them in service planning meetings, house meetings, meetings with your financial planner and attorney, social activities, and any other aspects that involve your child with special needs. The more involved everyone is, the more comfortable they become – including service providers in knowing who to contact in the absence of mom or dad.
If a brother or sister is not able or willing to be the future caretaker, it is very important to allow them to express their feelings and intents about their future role. Sometimes parents hope that all children will work together for the best interests of one another – and put the needs and interests of the special needs child first. The reality is not always so. Parents should not just assume that the other children will fulfill their expectations. They may need to reach out to professionals who have the expertise, time and abilities to provide for your child’s future care.
There are a number of organizations that have services established to provide for these needs. See PLAN, Inc. – Planned Lifetime Assistance Network (www.nami.org), PALS, Inc. (www.palsinc.org) and others locally. There are other sibling support groups for both young and adult siblings. See information and workshops for sibling support groups at The Arc’s Sibling Support Project and Sibshops at www.thearc.org.
My 44 year old brother was living at home with my aging parents. Their plan was that he would continue to live in the family house or live with me when my parents died. Until I attended an adult sibling support group, I never knew that there were options available to us. I became involved as his advocate and served on our local Citizen Advisory Board for the Department of Mental Retardation and local Arc. With the information that I learned, I was able to help my parents and my brother to move forward in planning for his future today while my parents are still alive. He is now living in a supported apartment in town enjoying his independence while my parents are proudly seeing his abilities soar. We are all in a much better position to support his future needs. --–Ron’sJoe’s sister
In addition to viewing the family as the potential source of supports, there may also be financial responsibilities associated with families. Initially, planning needs for more than one child may require financial compromises. One of the issues facing our families is that in many cases households have only one spouse in the workforce while the second spouse is required to care for an individual with a disability. Careers may have to be put on hold. Loss of earnings, a reduction in disposable income, and loss of retirement savings can also occur. In many traditional situations, the family has the option to choose between being a two income household or having one parent be the single wage earner. In cases where families have a child with disabilities, there may be no choice. One parent may have to stay at home either full time or part time.
When our son was age one, he developed a significant seizure disorder. Ordinary activities of daily living, even as basic as mea times, became a major challenge for our whole family. We tried to get help from various government agencies for personal care attendants. But after the appeal process to Medicaid, the arbitrator’s determination was “the parent was the best suited caregiver”. Because of this decision and the inability to secure the additional supports that were needed for our family, my wife was forced to sell her business that she built to stay home with our son as his primary caregiver. We had no choice. -- Jason’s Father