AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Individuals with disabilities live longer: Are you planning for their future care?

BY H. BARRY WALDMAN, DDS, MPH, PHD, RICK RADER, MD, DHL (HON), SETH M. KELLER, MD AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

"Most people with intellectual and developmental disabilities (I/DD) have a need for support throughout their lives. With their growing life expectancy the numbers of older adults with I/DD continues to expand, and community agencies and families now face the challenge of providing supports as these adults experience age-related changes. In comparison with adults without long-term disabilities, adults with I/DD are more likely to experience earlier age-related health changes, limited access to quality health care, and fewer financial resources. In addition, they are more likely to be living with parents into adulthood and have more limited social supports and friendships outside the family." 1

FIRST, THE BIG PICTURE

The population of the United States has enjoyed more than a century of nearly uninterrupted declines in mortality and rising longevity. In 1900, one in 40 Americans died annually. By 2013, that rate was roughly one in 140; a cumulative improvement of more than two thirds. Life expectancy at birth rose by more than 30 years over this period, from 47 to 79. In the early part of the twentieth century, public health measures and improved nutrition led to rapid reductions in mortality caused by infectious diseases. As a result, cardiovascular disease and cancer accounted for nearly three quarters of all deaths by 1950. Beginning in the 1960s medical advances and changes in people's behavior turned the tide on these diseases, and mortality improvements since then have been driven primarily by better treatment and disease management. 2

Despite our progress, some improvements have yet to reach more vulnerable populations.

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan.

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STIRRING STATISTICS: The survival of individuals with Down syndrome has dramatically increased over the past 50 years. Advances in general health management mean that the life expectancy of people with Down syndrome is approaching that of the general population

SPECIFICALLY, INDIVIDUALS WITH DISABILITIES

"As they age, people with I/DD seek the same outcomes as other people without I/DD, including (a) maintaining their physical and mental health and ability to function as independently as possible; and (b) actively engaging with life through friendships, contributing to society, and meaningfully participating in community life. However, older adults with I/DD are often more vulnerable to conditions that will make their old age potentially more difficult." 1 Nevertheless, increases in the life expectancy of people with intellectual disabilities have followed similar trends to those found in the general population. "With the exception of people with severe and multiple disabilities or Down syndrome, the life expectancy of this group now closely approximates that of the general population. Middle and old age, which until 30 years ago were not recognized in this population, are now important parts of the life course of these individuals (emphasis added)." 5

Reports from other studies also indicate that: 

AND WHAT OF THE CARE FOR INDIVIDUALS WITH DISABILITIES AS THEY GROW OLDER?

Repeated studies emphasize the need to plan for the economic, social and personal support for children and adults with disabilities, as:

"About 860,000 people (sic) over 60 (years of age) nationwide are… caring for someone with intellectual or developmental disabilities in their home. And many are waiting, sometimes for years, for state-provided Medicaid help for their disabled child, sister or brother, such as placement in a group home, day services, or transportation or employment programs. If they can't afford to pay for these services on their own, under the federal-state Medicaid system, their relative could end up in an institution." 9

As the number of older caregivers grows, and their need for assistance becomes more critical, several states have passed legislation to give them a chance to help decide where and how the person for whom they provide care will live. Tennessee passed a law in 2015 to ensure that anyone with an intellectual disability, having a caregiver over 80 years of age, would receive the services they needed. This year, they expanded the law to those with caregivers over 75 years. In 2014, Connecticut passed a similar law that is helping about 120 people with a caretaker over 70 years. The generation of caretakers over 60 years watched over decades as the U.S. grew more understanding and inclusive of people with disabilities. A movement swept the country in the 1970s and 1980s to deinstitutionalize people with disabilities. For decades now, most people with disabilities who receive Medicaid help have been cared for at home by family members.

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FINDING A FIT: A significant problem with succession planning is the scarcity of residential, employment and recreational services that suit individual's particular needs and abilities.

• The move toward deinstitutionalization provides care that is more personalized and also saves the states money. The average costs for care in a state-run institution in 2013, ranged from about $129,000 a year in Arizona to about $603,000 in New York, while the average state costs of community-based services nationally is $43,000, according to the University of Colorado.

• What this has left, though, is fewer residential options and longer waiting lists. About 198,000 people were waiting for home- or community-based services in the 34 states that reported data in 2013, according to University of Minnesota research. The longest waiting lists were in Ohio (41,500), Illinois (23,000) and Florida (22,400).

• Under Maryland laws, people with intellectual or developmental disabilities who are transitioning out of the school system at age 21 receive some services. Yet 7,600 people on the waiting list in Maryland either received no services or needed more.

• Courts have ordered some states to provide more community-based services.9

REALITIES:

"Fewer than half (emphasis added) of parents of children with intellectual and developmental disabilities make long-term plans about who will take over their child's care if the parent or other relative providing care dies or becomes incapacitated, a new study suggests… Adults with intellectual or developmental disabilities are significantly more likely to be placed in institutional settings if care plans are not in place when the parent providing care dies or becomes too old or too ill to continue…" 10

Some parents report that their planning efforts were thwarted by interpersonal conflicts – such as disagreements with the other parent about what should happen – or by family members' refusal to discuss alternative arrangements. The topic was too "emotionally loaded" or stressful for family members. Financial constraints were significant barriers to succession planning for almost half of the families. However, an even greater problem, according to more than 60% of the parents in the study, was the scarcity of residential, employment and recreational services that suited their child's particular needs and abilities.

Conclusive actions included making residential arrangements or writing a letter of intent to guide future caregivers or legal guardians in making decisions about the types of care the person with disabilities is essential. 10

REMEMBER:

• The life expectancy for people with Down syndrome has increased from 12 years old in the 1940s to nearly 60 today.

• Increasing numbers of children are also being diagnosed with autism, which by itself does not affect life expectancy. 

• Veterans of ongoing conflicts overseas, many without spouses, have been returning home with traumatic brain injuries and other disabilities. 11

Is your family prepared for these eventualities?• 

ABOUT THE AUTHORS: H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. Email: h.waldman@stonybrook.edu. Rick Rader, MD, DHL (Hon) is the Director of the Morton J. Kent Habilitation Center, Orange Groove, Chattanooga, TN; Senior VP Public Policy, American Academy of Developmental Medicine and Dentistry; Adjunct Professor, Human Development, University of Tennessee-Chattanooga. He is Exceptional Parent Magazine's Editor in Chief. Seth M. Keller, MD is Co-Chair, National Task Group on Intellectual Disabilities and Dementia Practices Chair; Adult IDD Section, American Academy of Neurology; Past President, American Academy of Developmental Medicine and Dentistry. Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles; and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.

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