by: Begley Law Group

by Thomas D. Begley, Jr., Esquire, CELA

[Here are links to Part 2 , Part 3 and Part 4 .]

Special Needs Planning for loved ones with disabilities is extremely important.  As long as parents are alive, they will care for their children with disabilities.  The problem begins when the parents are gone.  Many children with disabilities will be unable to take care of themselves.  How will they live as happily and productively as possible once the parents are no longer living?  Where will our children live, who will take care of them, what will they do for money?  All of these things need to be addressed.

The Tools

There are five important tools in planning for children with special needs.  They are a Life Care Plan, Public Benefits, Supported Decision-Making Agreement, Estate Planning, and Special Needs Trust.

  1. Life Care Plan.

The Life Care Plan should be the first step in any planning for loved ones with disabilities.  Where possible, a professional Life Care Planner can be engaged to prepare a plan.  The Life Care Planning process usually begins with an interview with the parents and then, when appropriate, an interview with the disabled person.

  1. The Players. The Life Care Plan outlines who the important players are in the life of the individual with disabilities.  The players would include the person with disabilities, parents, guardians, trustees, important contacts, involved family members, pets, and friends.
  2. Medical Information. Information should be gathered concerning the individual with disabilities’ physicians, therapists and specialists, prognosis, medical coverage, preferred hospital and pharmacy, necessary medications, treatments or special care, allergies, emergency instructions, and whether the individual needs assistance with taking medicine (i.e., insulin, shots, or certain pills).
  3. Public Benefits. Public benefits that the Individual may be receiving, whether those benefits can be maximized, and additional public benefits that may be able to be accessed.
  4. Abilities and Disabilities. What are the abilities and disabilities of the individual with disabilities including limitations, extraordinary powers, medical or adaptive equipment/supplies, interaction with others, stress, and change?
  5. Personal Characteristics. These would include general, personality, preferences, likes and dislikes, interests, male/female attendant, clothing, favorite places, and sizes.
  6. These would include housework, recreation, daily routines, visitation, work experience, and school.
  7. Personal Care. What type of personal care does the individual need?  These would include assistance, dressing, bathing, hair care, shaving, using the toilet, other personal hygiene, special reminders, and special instructions.
  8. These would include preparation of meals, food allergies, likes and dislikes, eating assistance, and other.
  9. Care and Supervision.
  10. This would include current employment status and assistance in obtaining employment.
  11. Social Activities.
  12. Hopes and Expectations. These would include hopes, necessary action, additional information, additional instructions.
  13. Estate Planning. Is Estate Planning possible?  How would it be accomplished?
  14. Does the person with disabilities need a Guardianship?
  15. Public Benefits.

Is the beneficiary receiving or will the beneficiary be applying for public benefits as follows: Supplemental Security Income (SSI), Social Security Disability Income (SSDI), Railroad Retirement Disability (RRD) Benefits, Medicaid, Medicaid Waivers, Katie Beckett Waivers, Childhood Health Insurance Program (CHIP), Medicare, Medicare Buy-In, Federally Assisted Housing, SNAP (Food Stamps), Prescription Drug Assistance, Low Income Heating and Energy Assistance (LIHEAP), Temporary Assistance for Needy Families (TANF), Division of Developmental Disabilities (DDD), Group Home, Psychiatric Institutionalization, Veterans Disability Benefits, and/or any other Public Benefits?

  1. Support Decision-Making Agreement.

The Brittany Spears case focused the attention of the nation on limitations of the Guardianship system in the United States.  While Guardianships serve a worthwhile purpose, they are often unnecessarily restrictive.  The goal of a Guardianship is to embrace the least restrictive alternative to allow individuals to maintain their rights, dignity, and independence.  Nevertheless, Guardianships do restrict the rights of people to direct their own lives in important areas of decision-making.  In some instances, individuals are stripped of their right to drive, vote, marry, etc.  While the loss of these rights can be limited by Court Order, Guardianships are often a harsh remedy.

Many families are unaware that supported decision-making is an option for individuals with cognitive disabilities and many courts are also unfamiliar with the concept and how it how it can be utilized.  Some jurisdictions, Texas, Delaware, District of Columbia, Alaska, Wisconsin, North Dakota, Nevada, and Rhode Island have supported decision-making statutes.  New Jersey and Pennsylvania are among the states that do not have these statutes yet but, even absent these statutes in these states, families, disability organizations and even courts are recognizing the importance of these agreements.

Supported decision-making should be considered by an individual who has a cognitive disability or disabilities and needs assistance in making major life decisions but appears to be able to do so with the support of a trusted advisor.  The trust advisor could be a family member, a friend, a professional or advocate, or a community member.  These trusted advisors, called “Supporters,” assist with gathering information for medical, psychological, financial, or educational decisions, explaining available choices and options so that the individual with disabilities, known as the “Decider,” can make the best decisions, and then the Supporter helps communicate the Decider’s decisions to the appropriate parties.

These arrangements can then be memorialized in an agreement.  Lawyers representing clients in Guardianships should first consider whether a Supported Decision-Making Agreement can be used in lieu of a Guardianship.  Before entering an Order for Guardianship, courts should consider whether a Supported Decision-Making Agreement is a viable alternative.  In determining whether or not to terminate a Guardianship, courts should also consider whether the ward would be able to function without a Guardianship if a Supported Decision-Making Agreement were in place.

Supported Decision-Making Agreements should be used in conjunction with medical Powers of Attorney, financial Powers of Attorney and, where appropriate, a Will.

  1. Estate Planning.
  2. Estate Planning for Parents. Parents of special needs children should consider estate planning documents.  These would include Wills, Living Trusts, Living Wills, Powers of Attorney, a Third-Party Special Needs Trust, and coordinating probate and non-probate assets such as life insurance, retirement accounts, annuities, payable on death (POD) accounts, transfer on death (TOD) accounts, and joint tenancy and tenancy by the entirety assets.
  3. Estate Planning for Child with Disabilities. Estate planning documents for a child with disabilities should be considered when the child has sufficient mental capacity to understand these documents.  The documents would include a Will, a Living Will, a Power of Attorney, and a Supported Decision-Making Agreement.