Building Support Systems for your Family with Special Needs
Thursday, November 14th, 2013
A few weeks ago, the staff of M&L came across an article published in the New York Times that served as both an inspiration and a caution: the article, which was written about the Kuntz family from Vancouver, B.C., explored the troubles that the family had while attempting to secure a guardian for their son Josh, an individual with special needs. According to Josh’s father, as he stated in the article, most family members were reluctant to agree to assume the role, as they viewed the responsibility as overwhelming. The Kuntz family described themselves as locked in a situation rife with pain, despair, and desperation – and they were on a downwards spiral.
Here at M&L Special Needs Planning, we are very familiar – professionally and personally – with the incredible responsibility that comes with having a child with special needs. We know that parents worry about the practicalities of life for their child, i.e. finances, living situations, employment, etc. but we are also aware of the unspoken worry – the worry that is often buried under the necessary tasks of day to day life: “What will happen to my child after I am gone?” We are familiar with this concern because we share it with you – as parents of children with special needs, we all wonder about the future. Will our children be happy? Will they have a job that they enjoy? Will they have a fulfilling emotional and social life?
Here at M&L, we can help you with the practicalities. Our Comprehensive Special Needs Financial Life Plan can help you to identify your current financial situation and your long-term financial goals, and help you to plan to cover any existing gaps between the two. We can counsel you in regards to insurance needs, the implementation of the special needs trust, the considerations of guardianship and how to appoint a guardian – we can even provide you with a how-to video that covers creating the Letter of Intent.
And, in addition to all of this, we can help you by offering you one very, very important piece of advice: when your child with special needs is born, take the time and invest the emotional energy into building a long term support system for you, your child with special needs, and your family as a whole. It is this support system that will give you the peace of mind that comes from knowing that there will be a community of individuals that love and care for your child, and will ensure his or her well being in the event that you are no longer able to do so.
Tips to Building your own Special Needs Support System
We began this blog by discussing the article written about the Kuntz family. When we left their story, the family was trapped in a very negative place, with (what they felt as) no way out. Fortunately for the Kuntzs, they were put in touch with an incredible innovative organization located in Vancouver: Planned Lifetime Advocacy Network (PLAN). PLAN helps families such as the Kuntz’s’ build extensive support systems based on cooperative, mutually beneficial personal relationships. Through PLAN’s help, the Kuntz’s’ were able to establish a network of support and care filled with people who were in similar situations. This system of support that was in place allowed the Kuntz family to approach individuals to act as a guardian for Josh without placing 100% of the responsibility on the shoulders of that guardian. This support system ensured that the Kuntzs did eventually appoint a person to act as guardian. (For more information, please visit the PLAN website, or read the article in full.)
Unfortunately, not all cities and towns have an organization such as PLAN to help them build a support system. Here at M&L, though, we have compiled a list of suggestions to help you start to build that system of support that will see you through the challenges associated with raising a family with special needs:
Build A Relationship with your Child’s Medical Team
Building a relationship with the different medical professionals that are involved in your child’s medical care – right from birth – can give you access to information and resources that you may not otherwise come across. Ask them for recommendations to support groups, organizations, therapies, etc. Talk to them, and discuss your fears for the future of your child and family. They may be able to recommend strategies that will help you and your family cope with a diagnosis in the early days, and deal with the challenges that arise as your child grows. Also, if these professionals are going to be taking care of your child in the long term, building a good relationship early on can help alleviate stress down the road.
Contact Special Needs Organizations and Support Groups in Your Area
Another good way to build a support system for your family is to contact the special needs organizations in your area, and maybe meet with a staff person or a counselor. These organizations often have regular activities, outings, group events, and support meetings. By attending these events and becoming a part of these organizations, you and your family are joining a community, and making connections. As well as helping you create bonds and socialize with other parents and children and socialize, these organizations can keep you updated on news and medical research regarding your child’s disability.
Build Relationships Within your Child’s School System
When your child begins school, this also presents another opportunity for you to network, socialize, and meet parents with whom you can build relationships. After school programs, play dates, school trips – all these opportunities and shared experiences can help parents bond, and build networks of support that can last long after the children have left school. We have heard many stories of parents of children who met in school teaming up to effect change in the special needs community – the founders of the Center for Independent Futures are just one example.
Remember to Include Your Family!
Although family members may seem to be an obvious source of support, it is common for parents of children with special needs to shut out relatives for fear of creating a burden or overwhelming relatives with the needs of the child. Experts caution against this – they recommend that it is even more important to include family members after the birth of a child with special needs. Remember, they may not know how to act around you, or around your child – it is important to invite them in, and to include them in day-to-day life. This will go a long way towards ensuring that a relationship is formed between your relatives and your child.
Need Help? Call Us!
If you would like to discuss the possibility of creating your own Comprehensive Special Needs Financial Life Plan for your family with special needs, or would like to investigate how to plan for the future of your child after you are gone please contact us! We are here to help, and to discuss any issues or concerns that you may have as you journey through the special needs planning process. And, although we can’t build your support system for you, we can provide you with some advice as to what has worked for us – and what hasn’t.
Thanks so much for dropping by the blog today! Hopefully we provided you with some valuable advice for planning your future. And, if you haven’t done so already, check out Independent Living Program and Housing Project – it launched last Monday, November 11th and is located under the housing tab.
See you next week!
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