The Center for Rehabilitation Outcomes Research (CROR) has received a new $4.4 million, five-year grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR). The goal: to come up with better ways to measure quality of life for older adults and people with disabilities who receive home- and community-based services and supports (HCBS). The over-arching purpose of the work is to help people with any kind of disability “live a life of their own choosing,” says Principal Investigator and CROR Director Allen Heinemann, PhD. “There are too many older adults in nursing homes because their home isn’t accessible or they don’t have children to help with issues. And there are a lot of people with severe mental illness who are at risk of rehospitalization but, with additional support from a care manager, could continue living independently in the community.”
NIDILRR, which is part of the federal government’s Administration for Community Living (ACL), funds research that helps people with disabilities live independently and actively participate in their communities. The 1990 Americans with Disabilities Act established that segregating people with disabilities in institutions is a form of discrimination. But to live independently, many people with disabilities need some assistance with activities of daily living – bathing, eating and getting dressed, among others. An estimated 4 million people in the U.S. are receiving some form of home- or community-based services.
Because most of these services are paid for by a combination of federal and state dollars, NIDILRR has an interest in both improving quality of life for people with disabilities and promoting care that keeps people out of institutions. There is evidence that some progress is being made: The proportion of Medicaid expenditures on long-term services and supports, which include home- and community-based services, increased from 13% in 1990 to 55% in 2015. That spending enabled an estimated 3.2 million people who were nursing-home eligible to receive care in their communities in 2014, according to research by the Kaiser Family Foundation. Since the mid-2000s, Medicaid programs have spent more on home- and community-based services than they have on institutional services, and the share of long-term services and support spending on HCBS has continued to steadily increase.
When it comes to having a better quality of life, we know that one size doesn’t fit allAllen Heinemann, PhD
The group of people who are intended to be helped by the new grant is extremely diverse, which presents an unusual challenge. It includes elderly people who need assistance and younger people with intellectual and developmental disabilities such as autism, Down syndrome and cerebral palsy. Another cohort comprises people under 65 with a range of physical disabilities related to conditions like stroke, traumatic brain injury or spinal cord injury. A fourth group is made up of people with mental illnesses, such as bipolar disorder or schizophrenia, that interfere with their ability to function. “When it comes to having a better quality of life, we know that one size doesn’t fit all,” Heinemann says.
Adds Anne Deutsch, PhD, a CROR research scientist who is chairing the grant’s Advisory Committee: “The populations are very different but one thing is the same: People are getting services so they can have a fulfilling life.” The Advisory Committee, which is in the process of being formed, will be made up of two groups: a Participant Council of people who receive home- and community-based services and their advocates; and an Adoption and Implementation Council, which will include service providers, health plan administrators and representatives of Medicaid programs.
CROR will be developing and testing new non-medical quality-of-life measures for people receiving home- and community-based services. It won’t be easy to come up with measures that are equally meaningful for all the people who receive services, researchers agree. In contrast to objective measures like number of days spent hospitalized, quality-of-life assessments are subjective and vary with each participant. For example, an elderly person with disabilities is less likely to be interested in getting a job than a younger person. One person’s goal may be to stay at home while another may want to move away from home into their own apartment. “There’s not a standard goal for everyone,” says Deutsch. “But are they making progress in a way that demonstrates they are benefitting from the services they’re receiving?”
In addition, some people with developmental disabilities, dementia, traumatic brain injury, or other disabilities may have problems communicating their desires. Some may not be able to be interviewed without the assistance of a caregiver or advocate. But veteran scientific researcher Sara Karon, PhD, who is heading CROR’s work to develop new measures, isn’t discouraged. “Even if someone isn’t verbal, that doesn’t mean they can’t be part of the interview. If there’s an advocate speaking on their behalf, we ask them if what the advocate is saying is correct,” says Karon, who has spent decades developing quality-of-life measures for people with disabilities. “I’ve never seen a situation where a person can’t have some input into what they want.”
The populations are very different but one thing is the same: People are getting services so they can have a fulfilling life.Anne Deutsch, RN, PhD, CRRN
Another hurdle is getting care-giving organizations to buy into the idea. Most home- and community-based services are delivered by county departments of health and human services and nonprofit groups such as Catholic Charities. These organizations may resist having a new chore added to their responsibilities and also having their performance evaluated by a new metric. “The strongest measures are of no value if they will not be used,” CROR researchers wrote in their project proposal. To increase the odds that CROR’s new measures are adopted, they will be developed in ways that simplify the process both for service providers who will be administering them and the people who are providing the feedback.
CROR is building on previous work in the same area by the University of Minnesota, which received a NIDILRR grant in 2015 to develop measures that assess the quality of care being delivered by HCBS providers. That work included building a database of assessment instruments, which now number more than 130. While that may sound like a lot, many of the existing assessments are more focused on medical topics than quality-of-life issues. “We need a better set of person-centered measures,” Karon says. “We’ll be looking at where the gaps are, where the existing quality measures are not doing what we want them to do.”
As part of its work, CROR will be developing a new database of HCBS measures that will be modeled on the Rehabilitation Measures Database (RMD), which it launched in 2011 to be a one-stop shop for busy clinicians and researchers looking for validated measures related to disabilities. The RMD recently passed an important milestone of including more than 500 assessment instruments. “One of the things I’d like to work on is making it easy to find what you want on the HCBS database,” says Linda Ehrlich-Jones, RN, PhD, who will lead later phases of the project. “When you have new people with different ideas looking at things, sometimes you can make them better.”