An interview with Stanley S. Herr, J.D., D. Phil.

Q: What challenges do older adults with developmental disabilities and their families face?

A: As the Herr & Weber book, Aging, Rights, and Quality of Life: Prospects for Older People with Developmental Disabilities (Brookes, 1999) makes abundantly clear, such individuals are living longer, are surviving their familial caregivers, desiring "a good old age" [like the rest of us], and insisting that their rights are respected. These challenges require a paradigm shift in the quality and amount of services that industrialized societies are supplying them, as well as a new thrust toward self-determination, supports for the family as a whole, and the right to both live and die with dignity.

In the U.S., for example, we face a demographic juggernaut as the number of people with intellectual disabilities (a/k/a mental retardation) aged 60 and older doubles from about 526,000 to 1,065,000 by the year 2030. Unless the types of recommendations proposed in our book are followed, this society and others around the world will woefully fail to meet the challenges that I have summarized.

Q: How are these challenges different from those of 30 years ago (given legal developments)?

A: Today we have legal frameworks for responding to people with disabilities in a least restive fashion, or in other words, a most integrated fashion, which simply did not exist in 1970. The Disability Rights Revolution that we describe means that Congress recognizes in a series of laws, from the ADA to IDEA to the Developmental Disabilities Assistance and Bill of Rights Act, that disabilities, including developmental disabilities, are a natural and normal part of the human condition and require responses that minimally deviate in individually appropriate means from the way that older persons without disabilities are treated. These changes are not only in the legislative realm but have changed the way courts, consumers, families, and caring professionals structure and expect services to be delivered.

For instance, the U.S. Supreme Court's landmark decision under the ADA in the Olmstead case requires that residential services are provided in the most integrated fashion consistent with the individual's lack of objection to the community, the clinical judgment that the individual can be served in such a setting, and the lack of undue financial burden on the state. The net result of all these changes is the merciful shrinking of the institutional containment option, and the growth of new forms of supports that build on the particular needs of the individual through a personalized planning approach.

Q: What are some guidelines for setting up a guardianship arrangement?

A: Current professional thinking and legal practice stress alternatives to guardianship. First, the guardianship process is relatively complicated, time-consuming, and expensive. Second, the law has evolved a series of less drastic forms of support and intervention. Many of those options in the health care decision making domain are described in a chapter in our book. Third, the dignity and liberty interests of the consumer are often compromised by the imposition of guardianship arrangements.

So the short answer is that guardianship is rarely the right answer to the individual's support needs, and courts by statute in most states may not approve them if a less restrictive option is appropriate to the individual.

Q: What supports do adults with disabilities need to help them stay independent (in the least restrictive environment) as they age?

A: Without going through a laundry-list of specific supports (which will obviously vary with the particular needs, age, and aims of the adult), it is useful to think of some of the guiding principles for designing those supports. As we elaborate in our book, the principles that guide person-centered services include, but are not limited to, consideration of:

1. What is the least restrictive environment for the person?
   
   
2. By what means can the individual's self-determination be strengthened?
   
   
3. How do we ensure the individual's psychological and physical integrity?
   
   
4. How do we design person-centered planning not only in national blueprints but also on "the ground" when the consumer, his/her family, advocates and professionals meet?
   
   
5. What types of advocacy resources are needed to realize this type of planning, and the implementation of plans in practice?
   
   
6. How do we support older parents and other natural networks of such adults better as their strength and health wanes?
   
   
7. To honor an individual's choices and independence, how do we facilitate the participation of the adult and his/her allies in decisions with respect to styles of life?
   
   
8. In view of the current staffing crisis, how do we take steps that authentically improve quality of life when staff turnover is devastatingly high and in some states people who flip hamburgers can earn more money than frontline care givers to older people with disabilities?

In our 20 chapters, we have explored these issues in depth and come up with better ideas for offering supports that will sustain adults of all ages. Now is the time to understand and apply these good practices so that supports not only pass legal muster but lead to dignified lives that each of us would wish to enjoy as we age and face the joys and inevitable adversities of the aging process.