This issue of The Voice® was written by SNA members Thomas Begley, Jr., CELA, and Emily Schurr of the Begley Law Group in Moorestown, NJ. The firm focuses on all areas of elder and disability law, including estate planning, special needs planning, special needs trusts, personal injury settlements, Medicaid planning and applications, estate and trust administration, and guardianship.

Stephen Covey’s book, The Seven Habits of Highly Effective People, includes the habit Begin With The End In Mind. In planning for a child with disabilities, the place to begin is with a Life Care Plan.

The Life Care Plan begins with gathering the following important information: The contact information of the individual with disabilities. Whether they are married or single. Do they have capacity? Are they a U.S. citizen? Did the disability begin before age 22? If not, did it begin before age 26 or before age 46? What is the diagnosis for the individual with disabilities? Does the individual require assistance with taking medicine? How much money is available? What public benefits and private insurance is the individual receiving or able to receive? If there is a personal injury attorney involved, what is the attorney’s contact information? What is the contact information for the family member with whom the advising attorney will be working most closely? Will someone need to establish a special needs trust, and if so, who?

After you have obtained the basic information, you can develop the Life Care Plan, with details for the following topics:

  1. The Players. The players include the individual with the disability, parents, guardian, trustee, important contacts, involved family members, pets, and friends.
  2. Medical Information. Medical information includes physicians, therapists, specialists, prognosis, medical coverage, treatments, special care, and medical providers. Does the individual have private medical insurance? If so, obtain the insurance card and any other relevant information regarding coverage. Does the individual have Medicare? Does the individual have a Medicare supplement? If so, obtain the card. Does the individual receive Medicaid? A copy of the Medicaid card should always be obtained to verify what Medicaid program the individual is receiving. Does the individual receive dental coverage, vision coverage, and/or prescription drug coverage? Which hospital does the individual use? What pharmacy does the individual use? Obtain a list of all prescription and non-prescription medications. Does the individual suffer from allergies?
  3. Emergency. What instructions should be followed in case of an emergency?
  4. Assistance. What level and type of assistance, if any, does the person need?
  5. Abilities and Disabilities. Does the individual have difficulties or extraordinary powers with any of the following: hearing, seeing, speaking, communicating, walking, standing, coordination, memory, concentrating, or understanding? Does the individual require medical or adaptive equipment or supplies, such as glasses, dentures, braces, hearing aids, a walker or cane, a wheelchair, or a service dog?
  6. Interaction with Others. Does the individual get along with family, friends, authority figures, and strangers? How should any potential exceptions be handled?
  7. Stress. Does the individual have difficulties coping with stress? If so, what is the best way to handle that?
  8. Change. Does change in routine affect the individual? If so, how should this be handled?
  9. Personal Characteristics. What are the personal characteristics of the individual?
  • What is it like to live with the individual?
  • What is the person’s personality?
  • What are the person’s preferences, likes, and dislikes?
  • What activities does the individual enjoy?
  • Does the person need personal care? If so, for what? Does the individual prefer a male or female attendant?
  • Does the person need assistance with cooking and eating?
  1. Living Arrangements. Where will the individual live? Independently, in a group home, or with a family member? If a family member, what is the name of the family member? Has this been discussed with the other family members?
  2. Employment. Is the individual capable of working? If so, is the individual employed or unemployed? What professional skills and interests does the person have?
  3. Social Activities. What social activities, hobbies, and forms of entertainment does the individual enjoy?
  4. Transportation. What does the individual do for transportation?
  5. Religion. Does the individual practice a religion or have religious beliefs that must be followed?
  6. Hopes and Dreams. What are the individual’s hopes and dreams?
  7. Capacity. Does the individual have the capacity to sign estate planning documents such as a will, living will, and power of attorney? Alternatively, does the individual need a guardian appointed?
  8. Immediate Cash Needs. Frequently, the individual with disabilities has immediate needs. These might include the purchase of a residence, furniture, a vehicle, a vacation, a computer, an iPad, a cell phone, and repayment of outstanding debt.
  9. Budget. The budget should include monthly housing expenses, cable TV, internet, phone, streaming services, home repairs and maintenance, renter’s insurance, trash and garbage removal, and condominium or co-op fees. Transportation should also be considered, including auto insurance, license and registration, gas, oil, and maintenance. Personal expenses must also be budgeted, including items such as food, household supplies, clothing and shoes, vacations, entertainment, cosmetics, toiletries, sundries, over-the-counter medications, prescription drugs not covered by Medicaid, unreimbursed medical expenses, unreimbursed dental expenses, unreimbursed medical insurance expenses, and unreimbursed caregiver expenses.

The Life Care Plan can provide the individual, along with their family and loved ones, with a comprehensive resource for all aspects of daily life. A Life Care Plan charts the future for the individual with disabilities, serving as a set of goals and a roadmap. In addition, regular review of the plan is an opportunity to adjust for changes in the individual’s situation and to coordinate with other legal documents, such as parents’ estate planning documents and trusts.

About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney.

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