Planning for tomorrow with a person with special needs can be frightening and painful because it is planning for the day when we must rely on others to take our place.
Health care liaisons
Everyone needs at least two layers of backup agents under their Medical Power of Attorney. Everyone needs more than one person to be allowed to visit them.
Some name additional people on their HIPAA Medical Information Release. Others prefer to incorporate a “permitted visitors” clause in their Medical Power of Attorney. While not everyone needs to have access to medical information, the more who do, the more people who understand the person’s situation and the less the risk of miscommunication or partial communication. With a shared body of knowledge, people are more likely to understand and contribute to what needs to be done.
Trust Advisory Committee
These people can be members of a trust advisory committee, advising the trustee on what the person with special needs wants and needs.
It may be hard for a parent to let go, but filing a Motion to Substitute Guardian and getting someone in place before disability or death makes a parent unsuitable smooths the transition and avoids a gap of months during which someone may need but not have a guardian to make medical decisions or handle finances.
Since people will come and go and everyone’s memory is fallible, a useful special needs plan has lots of documents not written by a lawyer. These may be helpful to the trust officer as well as the members of the personal network. The perceived need for plans as well as trusts have given rise to Welthy and Hope Foundation.
While a family narrative and a letter of intent are not enough, they are a good place to start. They can introduce the person and his family, the people who support him, emergency contacts and directions, his status and goals. Produced electronically, they can direct people to other people and to hard copies of the trust, insurance policies, medical records, etc. Hal Wright’s The Complete Guide to Creating a Life Plan includes a suggested outline, attached to this paper. The family has probably considered these, just not in a systematic way which can easily be shared with others.
Parents have a wealth of knowledge, some of which is actually written down. “A day in the life” video can show how someone communicates thoughts and feelings, pain and pleasure; which positions are comfortable or comforting.
Parents who are overwhelmed by daily events can be encouraged to keep a journal, not necessarily a daily journal, but an electronic file or physical notebook in which they can record events as they occur. This record can be the basis for other documents. It is also helpful in its own right: so much happens and there can be so many times of crisis that it is difficult to remember even half.
There are several guided approaches to creating a life plan, meshing it with the parents’ retirement plans and plans for other children, and reviewing it annually. Special needs lawyers doing estate planning may consider this an important service. Those who do not, may at least want to provide guidance to the family and the team, reminding them of the many topics to discuss and document.
The Components of a Life Plan
Social life and community access
- Family, friends, and companions
- Life skills
- Spiritual life
- Daily, weekly, and monthly routines
- Entertainment, recreation, and hobbies
- Participation in organizational activities
- Circles of Support
- Employment, personal business, or volunteer position
- Skills coaching, vocational training or secondary education
- OJT training and assistance
- Earnings and employee benefits
- Social Security Ticket to Work, Trial Work Period, Plan for Achieving Self-support
- Type of residence
- Housemates and in-residence caregivers
- Property management
- Independence or semi-independence
- Cost of rent or mortgage including taxes, maintenance and insurance
- Human supports
- Assistive technologies
- Home modifications
- Medical, vision, dental, medication
- Speech, occupational or physical therapy
- Psychological or behavioral coaching
- Guardianship or other protections
- Government programs for income, healthcare, and disability services
- Dietary needs
- Personal fitness
- Day programs
- Respite care
- Management of medical, financial, and legal affairs
Other helpful resources:
*Hal Wright, The Complete Guide to Creating a Special Needs Life Plan (Philadelphia: Jessica Kingsley, Publishers, 2013), page 38.
Elder law attorney, Terry Garrett, CELA, is a member of the National Academy of Elder Law Attorneys and is an Approved Guardianship Attorney. She assists people in elder law, estate and special needs planning, guardianship and settling estates. She graduated with honors from Cornell University. She was on the Dean’s List at Wharton Business School. She earned her J.D. at Columbia Law School, receiving the Parker Award and a Mellon Fellowship.