November Is National Family Caregivers Month – A Special Needs Plan Recognizes the Importance of the Role That Family Caregivers Play

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“More than 65 million people – 29% of the U.S. population – provide care for a chronically ill, disabled or aged family member or friend during any given year, and spend an average of 20 hours per week providing care for their loved one.” A Special Needs Plan applauds these unsung heroes, and continues to implore families with a loved one with special needs to plan the future care giving environment.

Special Needs Planning

Easter Seals Sibling Study sheds light on the experiences of sibling caregivers as well as insight on the services and supports they need:

Critical for families with a loved one with special needs to plan for this loved one’s future caregiving environment.

A recent Sibling Study conducted by Easter Seals points out that as parents age, responsibility for care giving is more likely to fall on a brother or sister. Of respondents expecting to take on the role of primary caregiver in the future, 80% say they are comfortable taking on this role but 67% say they are NOT financially prepared, and only 40% are emotionally prepared.(See Link)

Ryan Platt, Founder of A Special Needs Plan explains, “Selecting a Future Caregiver for you loved one (when you are no longer here) is usually one of the most difficult decisions in planning for the future. When selecting a Future Caregiver you want to consider that person’s geographic location, Family Situation, Age, Experience with Special Needs, Knowledge of your loved one, your loved one’s comfort level with them, and that person’s career (ie. Do they travel extensively for work?)”
When parents are asking another family member, possibly a sibling, to become their loved one’s future caregiver (guardian), the future caregiver will have two questions.

The two questions are:
1.     How will caring for my loved one (my brother or sister) change my daily life and what will I have to do?
2.    Can I financially afford to care for them?

The current caregiver should, and can, provide them with these answers, BEFORE these prospective caregivers provide a Yes or No to taking on the role of future caregiver.

The first question can be answered by completing a Letter Of Intent. A letter of intent is an instruction manual for your loved one. It shares daily activities, daily challenges, habits, likes and dislikes, doctor’s information, therapist information, prescriptions, diet, favorite books, favorite movies, hobbies, social activities, social or religious groups your loved one is a member, organizations that serve your loved one, your vision for their future – basically anything and everything that can help this future caregiver see how life should look.

This sounds like just another task on a list that is already too long. It doesn’t have to be. A Special Needs Plan created a template letter of intent called The LIFE Journal.

A more difficult question to answer may be, “Can I financially afford to be the caregiver?”

To answer this question, it takes some thought and number crunching. Parents want to think about the vision they have for their loved one’s life. If they will need support during their lifetime, What type of support will they need? Do they need help eating, bathing, cooking, getting from one place to another, cleaning their room / house, communicating? Once we understand their support needs, we can then calculate the lifetime care costs of those needs. After calculating those needs, it is important to understand the resources that will be available, either from Parents or other family members in the form of existing assets or life insurance proceeds that will be paid and government benefits. Ryan Platt gives a helpful hint regarding life insurance, “Even if you die at age 85, always confirm if existing life insurance will still pay a death benefit at that time.” Most families rely on government benefits for at least a portion of their loved one’s lifetime needs, but please remember there are qualification requirements for most government benefits and the proper structure must be closely followed, both financially and with the correct legal documents.

Ryan Platt uses an understanding tone when he states, “I know these items can seem overwhelming, but many of us know the old saying, ‘How do you eat an elephant? One bite at a time!’ All these items do not have to happen all at once, but taken one bite at a time, You can do it.”

More about A Special Needs Plan:

A Special Needs Plan is a company founded in the belief of L.I.F.E. – Lasting Independence For Everyone™. They are an advisory firm with a mission of helping more than a million families secure that Independence throughout their child’s life.

To learn more, visit or

1Caregiving in the United State; National Alliance for Caregiving in collaboration with AARP; November2009

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Ryan Platt

Andrew Spafford
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