Today starts Autism awareness month in the United States.
When the month ends, after we take down our blue porch lights, after we put away the t-shirts showing support for autism until the next event, we, as a community are left with an epic issue. Autism awareness is more than letting your neighbors know about the way your child thinks or behaves. Those things are important but there is something even more important on the horizon.
When hearing the diagnosis of autism, our souls fall to depths that cannot be measured and our hopes of what we thought would be a future for our kid, lay shattered. Autism is expensive, and usually so much effort is put into getting initial therapy, that the future isn't always addressed the way it should be. Even if you think you have a solid financial plan in place for your child, there are things you may still not have thought of.
I am honored to have as the first interview for autism awareness month an article written by Betty Lehman for the "Autism Connection" Blog. Betty has 25 years experience in her field and is a passionate and very well versed advocate. She resides in Denver, CO, has a personal experience with autism in her family and has traveled a very unique journey. Her website is www.lehmandp.com
I deeply appreciate the time she has taken to write this and I hope that you all will share this with as many people as possible.
We would do anything for our children.
We plan their day, we plan their IEP's, we plan their home activities, we plan their therapies but we also have to plan their future!
The resources and personnel for planning for the future for families with children with special needs are beginning to evolve into meaningful and mindful Opportunities.
Just like an IFSP or an IEP, the plan is best created by a team of professionals who have an understanding of how to create a specific type of plan to support the needs of the entire family, including the family members with special needs.
Families may be led to believe if they have a certain kind of trust, they have done their planning.
A trust alone, particularly if there is no plan to fund it, is not a full life care plan.
The best way to consider what is involved with a full life care plan is to ask the question, “If my spouse and I perished in a common accident last night, would everything be OK?” If not, the solution is a fully considered life care plan for your family.
The first place to start is with a Family Mission Statement. Developing a Family Mission Statement is a means of discovering and expressing your family’s values to yourselves and to others. Your values as a family are the heart and soul of a fully considered life care plan. Developing documents that do not encompass your values will not express the quality of life you wish for your children if you are no longer able to guide their lives.
The next step is developing the Letter of Intent document. Your Letter of Intent expresses what you know historically and what you desire in the future for your children in areas such as:
· Medical History and Care
· Environment Management – what is needed to feel safe
· Social and Recreation
· Trustee(s): Who will help manage taxes and money concerns?
· Advocate/Guardian: Who will look after, fight for, and be a friend to your child? Who do I trust?
Although the Letter of Intent is not a legally binding document it is truly the most valued by all who succeed you because the information:
· Gives future support personnel insight and advice about your child’s needs
· Provides directions for lawyers, trustees and guardians about your wishes
· Saves time when others know your child’s likes, dislikes, self-management techniques, talents and strengths
· Protects your child from unnecessary chaos and turmoil when they must depend upon someone other than your family for care and support
· Paves transition by giving future support personnel information they will so vitally need, like your child’s medical history
After you have completed your Family Mission Statement and your Letter of Intent, you will have a much clearer idea of how you would like to protect and grow your assets when you have a conversation with a financial advisor as well as who you would like to name as guardians and trustees when working with an attorney on trust documents.
When selecting a financial advisor, your family is best served by choosing a Chartered Special Needs Consultant (ChSNC) who has the additional training to understand the high stakes for families with loved ones with special needs. A ChSNC understands the requirement to plan for the financial needs for additional many years potentially needed to support the quality of life for a person who may not necessarily be able to fully support themselves financially, the education needs of typically developing children and retirement for the parents.
After meeting with a qualified financial advisor who is able to help you plan for the financial needs of your child, after you have retired and until your child’s own end of life, then your family will be ready to meet with an attorney. Choose an attorney who has a working relationship with your financial advisor. As mentioned above, your family’s professionals must work as a team to support you. They need to know the information each of them brings to planning, such as beneficiary designations which must be coordinated, and should never name a child or loved one with special needs as a beneficiary as this may throw that individual off public benefits.
One of the most critical aspects of a trust for a person with special needs is that it not be a “special needs” or Medicaid Payback trust if the funding is “third party” funding. Your family will likely need a Supplemental Needs Trust that can pass Medicaid’s standards and rules. Your trust needs to be able to be useful for 80 years or so, until the end of life of the person with special needs. When selecting your attorney, it is wise to ask how many Supplemental Needs Trusts they write annually. This is a niche practice and it’s best to utilize the services of an attorney who truly specializes in trusts for families with loved ones with special needs.
I specialize in supporting families to create their Mission Statement, Letter of Intent, and explaining and connecting families to public benefits and community resources with a mindfulness about the quality of life of every member of the family.
My company is Lehman Disability Planning, LLC and my website is www.lehmandp.com. Please feel free to write to me.
Planning for the future is a project that requires time, thought and professional support. A life care plan can and should be updated as often as needed as change is the only constant. Your plan will change in accordance with:
· Market performance changes
· Tax law changes
· Government benefits/services change
· Eligibility changes
· Family changes – new baby, divorce, death, marriage, inheritance
· People changes – developments, progress
Your family also needs to monitor if you are reaching your goals over time.
Although the efforts to create a fully considered life care plan are rigorous, when your planning is done to the best of your abilities, you will be able to answer the question above: “If something were to happen to me, my family will grieve, but they will be OK.” To be able to know in your heart and in reality you have created the supports others will need in your absence will bring great peace of mind to you and to the people you love.