AUCD Statement of Principles: 
Medical Interventions 


The Association of University Centers on Disabilities (AUCD), located in Silver 
Spring, MD, promotes and supports a national network of interdisciplinary centers 
on disabilities. The members of AUCD represent every U.S. state and territory and 
include 67 University Centers for Excellence in Developmental Disabilities (UCEDD), 
34 Interdisciplinary Leadership Education in Neurodevelopmental and Related 
Disabilities (LEND) Programs and 21 Developmental Disabilities Research Centers 
(DDRC). Together, these organizations advance policy and practice through 
research, education, leadership and services for and with individuals with 
developmental and other disabilities, their families and communities, in support of 
independence, productivity and satisfying quality of life. 

This past year, the issue of using medical interventions to ease the stress of long 
term care giving and improve the quality of life of people with severe disabilities, 
was raised in relation to a young girl named Ashley. Ashley is a child who is unable 
to communicate more than her basic needs and who requires 24-hour care due to 
the severity of her physical disability. The intensity of her care needs is not likely to 
change as she matures. Concerned about Ashley’s comfort and their ability to 
continue to care for her at home, Ashley’s parents consulted with their physicians 
and with their support, elected to treat Ashley with hormones to limit her skeletal 
growth and the surgical removal of her breast buds and uterus to prevent sexual 
maturation. 

These interventions - of which some have never been used before - raise issues and 
questions that are worthy of discussion. The following Statement of Principles was 
developed by AUCD after careful consideration of questions that appear below. 

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1. Benefit to the Individual: What specific benefit is achieved by the individual who 
is to receive these interventions? Who are the main beneficiaries of these 
interventions (the individual, the family, the community, the political system)? And 
what is the risk of these interventions (pain, anxiety, financial pressures). 
Principle 1: AUCD does not support invasive, irreversible medical 
procedures that are designed for the primary purpose of easing the stress 
of long term caretaking and improving the quality of life for a child unless 
there is a clear connection to outcomes that will benefit the individual with 
a disability and only after the benefit to the individual is deemed to 
outweigh the risks. A procedure may also benefit the family and the 
community, by reducing stress on the family or reducing the costs of care 
to a community, but these benefits should be secondary, not primary, in 
considering the appropriateness of the intervention. 

2. Evaluation of Treatments: Many treatments available seem intuitively beneficial, 
though in fact, there may be little evidence to support this perspective. In addition, 
there may be no information about the long-term effects of a treatment. How do we 
assess the usefulness or ethical nature of an intervention when we have no or 
incomplete data on outcomes? Should we only support those interventions that are 
“evidence-based”? 
Principle 2: AUCD does not recommend invasive, irreversible medical 
interventions unless there is scientific evidence to support the potential for 
a positive outcome for the individual. Medical procedures that lack a 
scientific basis should be viewed with skepticism and approached with 
extreme caution. As physicians and scientists, we recognize that some 
interventions may lack long-term data to support their current use, but 
future research may indicate their efficacy. To maximize the potential for 
future positive outcomes for individuals with significant disabilities, we 
support more research to develop a larger knowledge base. 

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3. The role of the family: What are the roles of families and professionals in 
decision making of this nature? What is the role of the individual with a disability in 
this decision making process if the severity of the disability or the person’s age 
precludes a full understanding of the intervention and/or the other options 
available? If a treatment is new, do we consider an ethics committee adequate to 
ensure an individual’s civil rights? 
Principle 3: AUCD recognizes and supports the role of families in decision-
making that affects sons and daughters with disabilities and their siblings. 
At the same time, AUCD feels that to balance the role of the family with the 
rights of the individual, it is essential to involve an advocate for the child 
and/or Ethics Committee members when a potentially life-altering 
irreversible decision is considered. If an Ethics Committee participates in 
this decision making, it should consult a full range of people related to the 
patient or his/her treatment or who bring relevant expertise to the table. 
They may include, but are not limited to: individuals with disabilities, 
family members, health care providers, an ethicist, an attorney, an 
advocate for the specific individual and an advocate for the family. If the 
individual with a disability can, in any fashion, participate in the decision 
under consideration, AUCD supports his/her involvement. 

4. Alternative solutions and access: Many families, individuals with disabilities and 
professionals do not know what alternative treatments are available and might be 
useful. How can this information be made more universally available? Even if they 
have this knowledge, given the differences in resources between communities 
and/or the lack of funding available to families, how do we make sure these 
treatments are accessible? 
Principle 4: AUCD believes that the need for invasive medical interventions 
is tremendously reduced when families can obtain the information, 
services and supports they need to care for family members with severe 
disabilities at home. Information about alternatives to these invasive 
procedures must be made universally available to the families and 
professionals who care for these individuals. States must reconsider where 
they allocate funds for individuals with disabilities. In lieu of the present 
situation, where the majority of dollars are spent on institutional care, 
most dollars should be directed to develop community services and 
provided to families or individuals with disabilities. This would ensure 
access to resources and supports that would significantly reduce the need 
for drastic interventions. 

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5. Knowledge of lifespan changes: Families who first learn that they have a child 
with a severe disability may hold the same biases and misunderstandings about 
disability as the culture in which they live. Professionals sometimes support these 
biases with labels that imply the child will not mature. Irrespective of the degree of 
disability, there are lifespan changes occurring with maturation that will affect the 
child’s behavior and relationship with the family. How can families be helped to 
make decisions for their child in light of these maturational changes? 
Principle 5: AUCD supports families having access to other families with a 
lifespan perspective on disability in order to weigh the consequence of 
their decisions. In addition, professionals counseling these families may 
need to broaden their own understanding of the maturation process of 
children with severe disabilities and how it impacts the child’s 
relationships in order to counter myths and biases that may influence 
decision making. 

Based on the above principles, AUCD recognizes that - given the present 
state of services and supports available to families and individuals with 
disabilities in the community - families may opt for invasive medical 
interventions for their loved ones. We honor their work and recognize the 
complexity of each situation. We believe that each family’s request must 
be considered on an individual basis, that families must be allowed to 
make their decisions out of the public eye, and that the principles stated 
above must be followed to the greatest degree possible. 

This statement was approved by the AUCD Board of Directors, February 2008. 
Learn more about AUCD at www.aucd.org. 

AUCD Medical Intervention Work Group, 2007-2008 

Kathleen Braden, MD (Chair). LEND Director, Eunice Kennedy Shriver Center, University of Massachusetts Medical 
School 
Jeffrey Brosco, MD, PhD. Associate LEND Director, Mailman Center for Child Development, University of Miami Miller 
School of Medicine 
Denise Lance, PhD. Parent/Consumer Coordinator, Kansas University Center on Developmental Disabilities, University 

of Kansas 
Judy Levy, MSW, LCSW-C. UCEDD Director, Kennedy Krieger Institute, The Johns Hopkins University 
Jan Moss, Family Advocate. Center for Learning and Leadership, University of Oklahoma Health Sciences Center 
Fred Palmer, MD. Director, Boling Center for Developmental Disabilities, University of Tennessee Health Science 

Center 
Rhoda Schulzinger, JD. AUCD Staff 

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February, 2008