Conference Notes
Ashley Durkee, M.A

On September 19, The Baddour Center wel-comed Dr. Tamar Heller to our campus in order to educate Baddour staff and invited guests about the unique challenges faced by individu-als with intellectual disabilities as they age. Dr. Heller's presentation was part of the Dr. Phil George Symposium series on campus.

Dr. Heller began her presentation by sharing her personal experiences of caring for a loved one with intellectual disabilities as they age. Dr. Heller helps care for her sister who has mild intellectual disabilities and cerebral palsy. She then discussed aging issues unique to particular conditions associated with intellectual disabili-ties:

Down Syndrome: early onset Alzheimer's Disease, early menopause, earlier losses of senses (e.g. sight, hearing) and adaptive skills, greater risk for joint problems, sei-zures, tumors, and heart disease.
Fragile X: early menopause, heart problems, seizures, visual impairment, musculoskeletal disorder.
Williams Syndrome: memory loss, gait prob-lems
Cerebral Palsy: reduced mobility, fractures, decreased muscle tone, difficulty eating or swallowing, less clear speech, bowel and bladder problems, osteoporosis
Epilepsy: osteoporosis and fractures (medica-tion side-effects), remission or worsening of seizures
Autism: mental health problems such as de-pression, long-term effects of medications

Additionally, many older adults with intellectual disabilities experience barriers to health care, such as difficulty communicating with health care providers, limited self-care abilities, lack of knowledge about health related matters, fears of examinations, challenging behaviors that may result in doctors performing less thorough exams, health care providers' negative attitudes toward or lack of training in dealing with people with intellectual disabilities, and inability to pay for services. However, there are programs be-ing implemented to help reduce these barriers to health care. Programs focused on training medical professionals about the unique issues involved in treating individuals with intellectual disabilities are slowly becoming more prevalent. Other programs designed to educate individuals with intellectual disabilities about health care issues, prevention, and their rights with regard to medical services are also helpful in breaking down these barriers.

In the afternoon session, Dr. Heller switched the focus to challenges facing caregivers as their family members with intellectual disabilities age. Throughout the United States, the majority of adults with intellectual disabilities live at home with their families. While that is not the case for the residents at Baddour, we know that our resi-dents' families have concerns about the future. According to Dr. Heller, the biggest concern of families is what will happen when they are no longer around to help care for the person with disabilities. Because we cannot guarantee that caregivers will live forever, Dr. Heller provided the group with suggestions for future planning to ensure that family members will continue to receive excellent care.

One of the suggestions Dr. Heller made involved The Future is Now project. The Future is Now curriculum allows for people with intellectual disabilities and their family members to provide and receive support from other families by shar-ing their experiences and what they have learned about future planning. The Future is Now pro-gram draws on principles of person-centered planning (PCP) because it encourages families to consider the preferences of the person with intel-lectual disabilities when engaging in future plan-ning. The curriculum consists of five workshops. The first session, called The Big Step, focuses on identifying the families' dreams for the ideal fu-ture, as well as their nightmare future scenarios. Session 2 focuses on building relationships and developing strategies for strengthening community involvement. In session 3, the focus is on housing; the families accumulate information about future residential options. Session 4 focuses on the person's preferences with regard to work and leisure activities and gathering information about relevant options. Finally, session 5 involves iden-tifying people who will be responsible for ensuring that the person's future dreams become a reality. This involves identifying future caregivers and sources of support.

Dr. Heller's presentation was very informative. She provided us with a lot of good ideas about future planning and answered all of the questions we had. While planning for the future seems like a scary and overwhelming process, Dr. Heller helped ease some of that fear by giving us ideas for how to get started as well as providing insight about what types of barriers to expect. All in all, the Dr. Phil George Fall Symposium was a success. We in Education and Research are already looking forward to the next one!