Why the Right to Choose is Important

Yesterday, I gave a two-hour training to a group of disability service workers and family members about guardianship laws. When I talk to folks about guardianship, the question always comes up: is guardianship good or bad? I usually answer: “it depends,” but I add that it is often unnecessary and possibly harmful. Yesterday, I gave my regular answer and added some information about “supported decision-making,” or SDM.

SDM is a way to maximize a person’s self-determination by coordinating his or her relationships, activities and services. It can avoid the need for guardianship but its principles should be used even if a guardian has been appointed. Research backs this up. Studies show that self-determination and the right to make life choices are key elements for a meaningful and independent life. To borrow an old expression, if you make a decision for someone else you help them for a day, if you assist them to make good decisions for themselves, you help them for a lifetime.

So, imagine my curiosity this morning when I opened an email attachment entitled Individualized Funding Analysis, Report for Manawanui InCharge. It turned out to be a report from three New Zealand researchers: Adrian Field, Michael McGechie, and Julian King. Their task was to determine if “individualized funding” for disability supports helps recipients. This funding approach, much like Oregon’s brokerage model, gives recipients more control and choice over when, where, how and who provides their disability support services.

This is what they found:

  1. Over time, disabled people who manage their own funding tend to use less of their allocated funding.
  2. The use of Individualized Funding by eligible people has increased from 4% in 2010 to 21% in 2014.
  3. The cost per person using Individualized Funding has decreased over the same period.
  4. People who have high and complex needs who move onto Individualized Funding tend to have lower costs overall than those who move into Residential Services.
  5. Individualized Funding users with high and complex needs are less likely to transition to Residential Care than people not using IF. This means that IF slows down the movement of people to higher cost services.
  6. One of the most significant challenges for people transitioning to Individualized Funding is grasping the extent of the options available and understanding what a good life looks like for them.
  7. Sharing knowledge through stories is seen as a critical part of a successful transition process.
  8. People choosing Individualized Funding identified four main themes that influenced this decision:
    •Building natural supports/networks
    •Mobility and technology
    •Having a home of their own
    •Being productive.
  9. Families who transitioned to Individualized Funding felt they were now able to live a meaningful life while making a difference in their community and leading social change.

The last two days can’t be a coincidence. The not-so-surprising research is in: people are happier when they have more control and choice in their lives.

For more information about the NZ study, contact Julz Britnell, julz.britnell@incharge.org.nz, or Marsha Marshall, marsha.marshall@incharge.org.nz.

For more information about supported decision making, check out: http://supporteddecisionmaking.org/choices_brochure and http://aaiddjournals.org/doi/abs/10.1352/2326-6988-3.1.24?journalCode=incl

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