Future and Estate Planning for People with Developmental Disabilities 


Learning from Project on Protecting Vulnerable Adults

Due to the added vulnerability of people with disabilities following the death of primary caregivers, most often parents, there are some important steps families and agencies can take when planning with the person with a disability for their future.   Total safety and security cannot be guaranteed for any of us but these steps can help in improving the level of these for people with disabilities.

What Families Can Do:
 
  1. Seek advice from professionals who are experienced in planning with people with disabilities.  Ensure your lawyer has experience in this area and if not ask him/her to consult with a lawyer who does.
  2. Involve your family member with a disability as much as possible.
  3. Understand and develop a Henson Trust and ensure all your extended family are aware of the trust so that they also know they can contribute to the trust via their own estate planning etc.
  4. Look at a co-trustee model whereby there are two co-trustees assigned for the Henson Trust.  This spreads out the work and also increases accountability and safety checks.  Avoid leaving all the responsibility and accountability to just one person. 
  5. Seek out information about all the components which increase safety not just a focus on wills and trusts.  Some of the other components are; friends, extended family, as much independence as possible, the person’s ability to communicate choices and concerns, stable housing and support, and active regular involvement in the community where they become known to many other people. 
  6. Ask for help in developing a network of people who are committed to your family member with a disability. 
   
What Agencies Can Do To Help:

1.   When hosting an estate planning workshop, first spend time talking with the lawyer to ensure they understand the Henson Trust model and equally important understand
      the increased vulnerability of people with developmental disabilities and as such the importance of stressing the need to build in people / support networks
      as part of the planning.
2.   Ensure any estate planning workshops hosted by the agency are facilitated by people who are very well skilled in this work and include a lawyer with experience in
      Henson Trusts as part of the workshop. 
3.   Whenever hosting an estate planning workshop include a component to help families understand the other aspects of planning for the future; friends / family / home
      / community involvement / as much independence as possible / skill development / communication and having choices. 
4.   Provide families with additional support following any future / estate planning workshop to help answer questions and in the building of networks of support.
5.   Assist families in developing networks of support and maintaining these.