Special Needs Families

80% of marriages with special needs children end in divorce.
–  NY Times

When we first read this statistic, we thought it was a misprint. It wasn’t until we began learning about and working with families with special needs that we grasped all of the complexities special needs families face. It’s intimidating. Special needs family members require a level of care and planning that, dare we say, most “typical” families would fail to provide or achieve. Just consider the situation confronting most special needs families:

  • Medical expenses can be extraordinary, in large part because they are ongoing for many years, and because the cost of medical care consistently rises much faster than overall inflation.
  • The financial support required to care for a special needs family member is generally high, but the ability of the family to earn a relatively high income is limited because one or more family members tend to invest most of their time caring for the family member with special needs.
  • Because parents and siblings are often the primary care-givers, the emotional toll on the immediate family can be tremendous.
  • Government financial aid is declining overall. Assistance programs are opaque (intentionally so, in our opinion), which means even a seemingly innocuous, but well-intentioned action can disqualify an individual from government help.
  • The legal planning process is among the most complex in the country, requiring the expertise of specialized professional advisors, preferably working together as a team.
  • Financial plans must simultaneously incorporate 2 generations, not just one, which lengthens the planning horizon, and increases the planning parameters exponentially.

But there is good news, lots of good news.

Consider that:

  • Special needs individuals’ life expectancies are now close to, if not equal to, the average population.
  • As a society, we are increasingly sophisticated when it comes to providing treatment options.
  • The avenues for special needs individuals to live independent, productive and fulfilling lives expand every day.
  • The number of professionals working with special needs families is growing every day, which improves the breadth and depth of resources families can tap for help.

At the end of the day, planning for a special needs family member is no different than it would be for anyone else:

To provide the family member with the opportunity and resources to achieve their potential.

This can take many forms, but typically has a few common aspects. The first is emotional support. If the family is strong emotionally, the family will be strong in all areas. This is perhaps the most overlooked aspect of planning for families with special needs, but it is by far, the most important. The 20% of marriages with special needs children that survive are undoubtedly emotionally sound. In fact, we would describe them not just as surviving, but as truly thriving. Overcoming obstacles such as these generally leads to an even deeper emotional relationship among spouses, who find their strength in each other.

The second is identifying and maximizing all available resources. This includes financial and emotional, medical and professional. Professional resources must be specialists in this area. This includes legal and estate planning attorneys, trustees, CPA’s, and financial and investment advisors. This area is far too complex to allow an unseasoned advisor the opportunity to make matters worse.

It is also important to consider how realistic it will be for certain family members, parents or siblings, to care for the family member with special needs. Not everyone can rise to the challenge, and in some cases, it might make sense to eliminate certain family members from the list of potential care givers and simply allow them to be family members, loved ones.

The third is communication. Extended family members are often oblivious to the intricacies of federal and state laws and government assistance programs. It’s not uncommon for an extended family member to make a gift to a special needs family member with the best of intentions, but in the process, completely disqualify that individual from assistance eligibility. It’s heart-breaking when it happens, and can only be prevented through clear and honest communication throughout the entire family.

The fourth is life-stage based planning. The needs of an infant when his/her parents are living are much different from that of an adult who is living on his/her own. For example, the financial needs of an infant might be small, when assistance programs are relatively easy to access, whereas the financial needs of a 22 year old can be tremendous, when the assistance programs end, pushing the financial burden entirely onto the family’s shoulders. The planning process is iterative, and must be reviewed frequently, and revised as often as necessary. This is not a “set it and forget it” process.

If you are a family with a member who has special needs, and are concerned about any of the above topics, or find yourself struggling to overcome any of the above hurdles, we encourage you to contact us only to answer your questions, not to sell you our services.

If you’re not ready to contact us but would like to learn more about special needs planning, we encourage you to review the following resources:

Books

  • The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child’s Life, by John Nadworny and Cynthia Haddad
  •  Special People, Special Planning: Creating a Safe Legal Haven for Families with Special Needs, by Peggy Hoyt and Candace Pollock
  • Life Planning for Adults with Developmental Disabilities: A Guide for Parents and Family Members, by Judith Greenbaum
  • Special Needs Trusts: Protecting Your Child’s Financial Future, by Stephen Elias
  • Special Needs Trust Administration Manual: A Guide for Trustees, by Barbara Jackins, Richard Blank, Ken Shulman et al

Websites