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A 10-point Financial Checklist for Special Needs Families and Caregivers

By Todd Daniel

            Generally speaking, parents everywhere want the best for their children – from infancy through old age.  They want them to be as happy as they can be, as healthy as they can be, as successful as they can be.  And for children with disabilities or special needs?  The wishes are the same, of course!  It just may take more time and effort to turn those wishes into reality. 

            If you're new to the world of caring for a person with a disability or if you're worried that you may not be doing all that you should be doing, this checklist could help.  It touches upon some important factors related to caring for a person with special needs. 

1.  Getting the Right Guidance 

When it comes to making the big decisions and long-term plans regarding a person with a disability, it's best to seek out the experts.  Just as you choose medical professionals who specialize in the particular disability or condition your child has, so too should you choose financial services professionals and attorneys who have the knowledge and experience to serve the special-needs community.  They are most aware of ever-changing laws, regulations, benefits, and programs that can affect you. 

2.  Creating a Life Care Plan           

A Life Care Plan is a comprehensive, all-encompassing plan that incorporates basic needs, goals and strategies for achieving the best quality of life in every area of life now and for the long term.  Taking time now to consider your loved one's current and future needs will help you to realize what aspects need attention. 

3.  Include Yourself in Your Plan 

It is just as important to take care of yourself and other family members' needs.  You'll want to ensure that siblings get a fair share of your attention and that you include them in your financial planning strategy.  Make time for yourself, as well.  Getting out to participate in an activity you love to do will help prevent burn out that can take a toll on relationships, careers, and family life.  In the long run, it will help you be a better caregiver.  And a careful financial protection strategy that incorporates the entire family could mean having money for your own retirement and your loved one's future financial needs, instead of one using up funds meant for the other. 

4.  Estate Planning 

Estate Planning is part of the Life Care Plan, and the complexity depends on your financial situation.  Note: The information provided is not written or intended as tax or legal advice and may not be relied on for purposes of avoiding any Federal tax penalties.  Individuals are encouraged to seek advice from their own tax or legal counsel.     

Some families may be interested in tax-saving advantages, establishing a third-party trust for the person with special needs, providing inheritances for their other children, and more.  Others may realize they simply need to purchase life insurance policies or change beneficiaries of policies already in place, and ensure that eligibility requirements for public benefits their loved one currently receives (or may receive in the future) continue to be met. 

Many parents want to name guardians to care for the person with special needs after their death, or find that assigning durable powers of attorney and health care proxies are smart measures to take.  Estate plans vary, and they're not only for the most affluent.  Your attorney can help you with your estate planning process. 

5.  Guardians 

A great deal could be said about naming a guardian for your child.  First, you must determine whether or not your child will need a guardian.  If so, your next step will be to consider exactly what responsibilities that person would have and the financial support a guardian would need to fulfill those responsibilities.  A Special Care Planner can explain the role of a guardian and walk you through “what-if” scenarios to give you a better idea of whether or not this is something you should include in your Life Care Plan.  

6.  Government Benefits 

To learn about state and federal benefits your loved one may be eligible to receive, begin with a visit to www.ssa.gov.  You'll find information about Medicare, Medicaid, Social Security Disability Insurance, and more, including how to qualify and how to apply. 

You may also want to check the websites for the State Children's Health Insurance Program (SCHIP)(http://www.cms.gov/home/chip.asp) and the Children with Special Health Care Needs (CSHCN) provision of the Social Security Act (http://www.amchp.org/MCH-Topics/A-G/CYSCHN/Pages/default.aspx).  Receiving these benefits can help enhance your family's and your loved one's quality of life. 

7.  Open Communication and Letters of Intent 

Once you've begun your Life Care Plan, it's valuable to let close friends and relatives know that you have a Life Care Plan in place.  Their love for the person with special needs may compel them to name your loved on in their will, or as a beneficiary to a life insurance policy they acquire, or they might wish to give them a monetary gift.  However, this generous act could cause your loved one to become ineligible for public benefits being received.  There are ways to accept these types of gifts without such consequence, though, and a Special Care Planner and an attorney skilled in serving the special-needs community can show you how. 

Another wise step is to develop a Letter of Intent.  This is a document that records everything you'd want someone to know about your loved one if should suddenly become unable to provide care.  It includes the obvious information – names and contact information for everyone involved in your loved one's medical, educational, and financial well being, family and hereditary information, medical history, religion and practices, and so forth.  But a Letter of Intent goes further than the obvious alone. 

A Letter of Intent provides your loved one's caregiver with an immediate insight into who your loved one is and what a typical day might be like.  You'll likely want to include such things as lists of favorite games, foods, people, music, and movies; sleeping and grooming habits; dreams and goals; special talents; and even dislikes.  A Letter of Intent will probably remain a work in progress because each day's events will remind you of something you'd want to add, to keep the picture of your loved one up-to-date. 

8.  Health Plans 

Because medical care costs can be high, be sure you have the best health care plan available to you.  If you and your spouse both work, annually review the health plans your employers offer and choose the one that provides the benefits your family needs at the most affordable price.  Understand which services and procedures are covered, and appeal if claims are denied. 

9.  The Age of Majority 

When your child reaches the age of majority, he or she is legally considered an adult (for most purposes) and will be expected to make decisions on his or her own behalf.  If your child will continue to need you to be the decision-maker, you must file for legal guardianship and be appointed by the court as guardian.  Keep in mind, too, that becoming an “adult” may make your child newly-eligible for some government benefits, or require your child to reapply as an adult for benefits now being received. 

10.  Moving Out, Moving On 

Becoming an adult may affect your child's housing situation.  If your loved one is living outside the home, does the facility have an age requirement?  If your child is able to live independently, will he or she want a place of his or her own, or to move into an assisted-living residence?  Begin looking for alternative accommodations well in advance.  Some facilities have long waiting lists. 

If your loved one will be college-bound, begin researching schools that accommodate special needs during the first year of high school.  When your child decides what to study, this pre-work will make the task of visiting and choosing a college easier. 

Ready to Begin? 

          If this sounds overwhelming it certainly can be.  But a Special Care Planner can help you take it one step at a time, working with you and others you rely on to provide the best care for your loved one and your entire family.  Talk with a Special Care Planner today to get started on your Life Care Plan or address specific issues you may have overlooked.

          A Special Care Planner receives advance training and information in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with people with disabilities and other special needs and their families.  The certificate program is offered by The American College in Bryn Mawr, PA, exclusively for MassMutual financial professionals.  

For more information please contact: 

Todd B. Daniel, LUTCF, CLTC

Special Care Planner

MassMutual Financial Group

(805) 370-6658


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