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Steven Lutzky spent the summer before college assisting his grandmother who had amyotrophic lateral sclerosis, a neurological disease affecting movement, including chewing, walking and talking. He kept her company, helped her during mealtime and assisted with suctioning her airways, all of which contributed to her being able to remain in her home. He was so affected by the experience that when he went to college at University of California, Santa Cruz, he took a course in death and dying that involved sitting in a cemetery and contemplating his own mortality.
When it came to picking a career, though, Lutzky had dreams of becoming a classical pianist. He had terrible bouts of stage fright, so his music professor suggested he perform at a local nursing home. Lutzky recalls one example where he saw a woman sitting in her own urine for over an hour before she was assisted by the staff. That experience was very impactful, and Lutzky decided to switch his career focus from music to psychology and sociology.
For his undergraduate thesis, Lutzky conducted an observational study in a nursing home and met Flora, a woman who had mild dementia, and yet was still ambulatory and able to take care of her daily needs. One day Flora took a bus to her old house and another bus back to the facility. As a result, she was labeled a “wanderer” and placed under increasingly severe physical restraints and given strong drugs. “I guess I just have to sit here and wait to die,” she told Lutzky. “She looked at me and said, ‘You have to do something about this.’” Lutzky titled his thesis “On the Removal, Storage and Disposal of the Elderly in our Society.”
'I guess I just have to sit here and wait to die,' she told Lutzky. She looked at me and said, ‘You have to do something about this.’
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Because of his experiences, Lutzky decided to devote his life to changing how long-term services and supports are provided in the United States. He received his PhD from the University of Southern California in Gerontology and Public Policy, only the second such degree ever awarded. “My grandmother’s last year was the best of her life and it made my family stronger,” he says. “I wanted to change the system to give individuals and families more choice and control so that the final chapter can be a capstone.”
Lutzky became a consultant at the Lewin Group, specializing in home- and community-based services (HCBS) designed to avoid placing people in institutions. He gathered data and wrote a paper for AARP that demonstrated how HCBS was a cost-effective alternative to nursing home care. He also evaluated Wisconsin’s Aging and Disability Resource Centers (ARDCs), which were created to help people understand what home- and community-based services were available to them.
I wanted to change the system to give individuals and families more choice and control so that the final chapter can be a capstone.
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In 2000, Lutzky was recruited to a new government position in Washington, D.C., where his role was to oversee all long-term Medicaid-funded services and supports. He gained his perspective on business operations within the design, development and evaluation of these systems, and laid the groundwork for a systemic transformation in which most people would receive HCBS rather than institutional care. A few years later, he moved to the Centers for Medicare & Medicaid Services (CMS) and oversaw the provision of grants and guidance to states to improve their HCBS delivery systems.
In 2004, in search of a better balance between work and his personal life, he founded HCBS Strategies, a Baltimore consulting firm that works with state governments and HCBS agencies to devise more effective and humane ways of supporting older adults and people with disabilities. As the firm’s name suggests, Lutzky’s work focuses on designing, implementing, and evaluating HCBS systems, which have been key to reducing the number of people institutionalized in the U.S. in recent decades (1). Since then, Lutzky and his team have worked with more than a dozen states and are currently working with Colorado, Hawaii, Alaska, Minnesota, Nebraska, and Alabama on their HCBS systems. Currently, Steve is aso a collaborator on the RRTC on Home- and Community-Based Services at the Center for Rehabilitation Outcomes. "Steve is a gamechanger because he is an outward thinker who is inspired by the individuals he works with,” says Renee Manfredi, a disability self-advocate who has worked with him in Hawaii. “He embraces the opportunities that are before him and doesn’t shy away from a challenge. He’s had so much faith in me and my abilities. He has looked past my disability to my ability.”
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References:
- National Council On Disability. (2015, August 12). Institutions inDetail. NCD.gov. .