Emotional Obstacles to Planning-People do not plan to fail, they fail to plan. The fact that most people are unfamiliar with many of the financial and legal terms involved in the planning process is not why they fail to plan. Reluctance to plan is often the result of not being able to set aside one’s emotions. It is not uncommon for a parent or caregiver of any age to be reluctant to plan for the ultimate day that they will no longer be able to care for their child. However, by not planning, we miss opportunities to see our children achieve full lives and a connection with their community.
Times of Family Crisis-We do have a choice; we can either be pro-active and plan or be re-active in a time of crisis. In many cases, families begin the planning process in the time of crisis – most often upon the illness or death of a parent or other family member. The problem with this approach is that planning in time of crisis is often based on emotions, and can result in less desirable outcomes. Even if there was a well thought-out plan, it can be tempting to change it in the time of crisis, although many are adivised not to do so a that time.
When Dad was first diagnosed with cancer, our entire family was overwhelmed. My brother’s first reaction was to move from his staffed-apartment back home with my mother. It took a great deal of counseling and support from his staff to help him and us to deal with the emotions and the reality that our parents will not be around forever. It would have been awful if he were to move back home at this point and lose all that he has achieved.
Having a professional viewpoint to guide you in a time of crisis can often help in the decision making process since he/she will not be emotionally involved. Most likely such a person will be abreast of current trends in disability law and planning and can advise you on appropriate options, strategies, or any changes that you should make at this point.
It is important not to plan immediately after you have a personal crisis. In fact, if you already have a plan in place, it is recommended not to make any immediate changes. Unless there is a true emergency that requires immediate attention, or if there are some specific legal and or financial strategies that have to be executed timely, it is recommended to wait between 9 months and 1 year before you make any major lifestyle changes or financial decisions.Allowing yourself to adjust to a new situation will help to remove emotions from the decision- making process.
Emotions as a Catalyst- Emotions are important in helping you to form a vision for your family member. Emotions can drive us to passionate feelings– either positively or negatively. Passionate parents have for many, many years been the ones to make a difference in the quality of life for their children. It is this passion – and the reluctance to accept the “status quo” of the current system - that has made it possible for our family members to become more independent in the community.However, you cannot make long term planning decisions based solely on emotions and passion. You need to first create the vision. Keep in mind that your vision may need to be modified based on the reality of your child’s abilities and the resources available to him/her. Then plan creatively to utilize the resources available to you to achieve your vision.
Your passion can be used to execute a plan of action in the event that the current service delivery system does not support your vision. As long as your vision is substantiated by a well thought out plan, you can change the system. This can take years, or even a lifetime. But if you plan ahead you can achieve your goals.
Throughout the planning process, you may find that the current system and its accessibility – or rather inaccessibility - to supports are roadblocks to achieving the vision for your child. In many cases these roadblocks can be a result of inefficiencies in the way that services are delivered and how the system functions. If this is the case, you must realize that it is possible to change the way that the current system works. Parents of generations before us have brought the movement to where it is today. Your emotions and your passion will provide the motivation and perseverance to make a difference. Emotions can lead us to move mountains for our children. This is perhaps one of a parent’s greatest assets.
Special Needs Planning Pointer:
We have been fortunate enough to work with families, who over 20 years ago, decided that they wanted their children with mental retardation to live independently in the community with adequate supports. This was at the time when institutions were the common “home” for individuals with mental retardation. It was the passion and dream of these parents who came together to create their own residential home and supports by utilizing their own private resources to pay for the cost of the program. Today this program continues to thrive as their children continue to grow. (For further information see www.specializedhousing.org).
Raising a child with special needs is something most of us never thought about. It changes our perception of the world; and also changes how the world views us. How we perceive our personal situation and the framework from which we view the world changes the way that we feel about everything –especially about money. This viewpoint drives the decisions we make in our lives and in our planning. In the beginning parents may struggle with negative emotions. Anger concerning the situation, guilt and questioning "what went wrong". Over time, it is very likely to grow to a more positive perception as our emotions change and we become more acclimated to the situation. Our views also extend to other family members and their perception of our situation – bringing different challenges and emotions to couples, siblings, relatives, and friends. We eventually will have a different perspective of the world and those around us – sometimes more positive, sometimes not.
Challenges Couples can Face-Sometimes it is difficult for couples to plan together with a shared vision of their child’s abilities and needs. One parent may be more accepting of the child’s diagnosis, while the other parent may be in denial. The results of this emotional disconnect between parents is improper planning – or no planning since they cannot come to an agreement on what is best for their child’s and their family’s needs. In order to reconnect emotionally, couples may need to seek professional counseling.
Special Needs Planning Pointer:
Sometimes it is incredibly difficult to overcome some of the emotional pressures of raising a child with disabilities. It may be necessary to seek professional medical assistance. Do not hesitate to talk to your doctor about your feelings or seek support from other parents. There are all kinds of support groups. Finding one that works for you can ease the isolation and provide opportunities to learn from others. A simple on-line search should help to locate one of these groups in your area.