The workshop’s final panel session featured five presentations on models and best practices. Vanessa Nehus, principal investigator for the Arkansas Disability and Health Program at Partners for Inclusive Communities,1 discussed her state’s program for assessing how well health systems are providing care for their members with disabilities. Michael Paasche-Orlow, associate professor of medicine at Boston University School of Medicine, described how the concept of universal precautions can reduce disparities in the provision of health care to individuals with disabilities. Beth Marks, research associate professor in the Department of Disability and Human Development and associate director for research in the Rehabilitation Research and Training Center on Developmental Disabilities at the University of Illinois at Chicago, spoke about culturally and linguistically accessible health lifestyle programs. Toyin Ajayi, chief medical officer at Commonwealth Care Alliance,2 described her organization’s program for integrating care for low-income elders and individuals with disabilities. Finally, Kathleen Bishop, director of program development in the Division of Person-Centered Supports at the New York State Office for People with Developmental Disabilities,3 discussed New York’s innovative service model for crisis prevention and response for people with intellectual and developmental disabilities. An open discussion moderated by Christine Ramey,
deputy director in the Office of Health Equity at the Health Resources and Services Administration, followed the five presentations.
Before beginning the presentations, Ramey mentioned a few of the federal initiatives for people with disabilities. The Centers for Medicare & Medicaid Services, for example, has an equity plan for improving quality in Medicare,4 which includes priority items relating to people living with disabilities. The White House has a webpage focused on disabilities,5 as well as the President’s Committee for People with Intellectual Disabilities,6 which is overseen by the Administration for Community Living in the U.S. Department of Health and Human Services (HHS). She also noted the existence of the federal Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities.7
Partners for Inclusive Communities, a program of the Arkansas University Center on Disabilities, is part of a nationwide network of university disability centers, said Vanessa Nehus. Her program is one of 16 funded by the Centers for Disease Control and Prevention’s (CDC’s) National Center on Birth Defects and Developmental Disabilities to address disability and health at the state level. “We need these in every state because you have seen the demographics,” said Nehus. In Arkansas, the demographics are even more dismal, she said, because the state has the highest rates of obesity, high rates of death from stroke and heart disease, high rates of cancer, and one of the highest rates of disability in the nation. “There is a great deal of need for both public health programs that are accessible for [people with disabilities] as well as for more accessible health care,” she explained.
When her program first began, CDC wanted a needs assessment, which involved pulling health surveillance and administrative data to form a health profile for the state. As part of this effort, Nehus and her colleagues toured the state and talked to people with a variety of disabilities to see where they were experiencing barriers when they tried to get health care or
4 See https://www.cms.gov/About-CMS/Agency-Information/OMH/OMH_Dwnld-CMS_EquityPlanforMedicare_090615.pdf (accessed October 10, 2017).
7 See https://www.fema.gov/office-disability-integration-and-coordination (accessed October 10, 2017).
8 This section is based on the presentation by Vanessa Nehus, principal investigator for the Arkansas Disability and Health Program at Partners for Inclusive Communities, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
public health services. These discussions identified many of the same problems that earlier speakers had highlighted, including the difficulty procuring necessary medical equipment, financial barriers, and attitudinal barriers. The prevalence of financial barriers was a surprise, she said, given the high rates of participation in public insurance programs such as Medicare and Medicaid, Nehus noted.
The next step was to conduct an access review of the state’s health care systems, but convincing health care facilities to allow them to do an access review was a hard sell, said Nehus. “Many doors were slammed in our faces,” she recounted, even though she and her colleagues pitched the reviews as a way for health care facilities to identify any barriers to access and improve the health of the people in their communities who report having some kind of functional disability. Her team had more success gaining access to larger health systems in urban areas, in large part, she believes, because those systems have risk management staff who understand the implications of what her program was trying to accomplish and who have done a better job making their facilities more accessible.
The access survey instrument she and her staff used looked at architectural specifications, parking, and location near accessible transportation, all things that can be photographed and for which it is easy to make recommendations. Her team also interviewed office staff to find out about programmatic accessibility, asking questions about whether individuals had the opportunity to self-identify as having a functional limitation when making care appointments, if appointments were long enough to accommodate the special needs of an individual with a disability, or if lifts or interpreters would be available.
One common finding, said Nehus, was the lack of a scale suitable for someone in a wheelchair and the failure of staff to know how to operate the lowering exam tables that the Arkansas Department of Health purchased for the state’s health systems a decade ago. She recounted how one facility had beautiful, accessible hallways and exam rooms, but the exam room with the lowering table had a bookshelf full of books partially blocking the doorway. As an aside, she mentioned that a colleague in a wheelchair was scheduled to demonstrate how to use that very lowering table on a statewide webcast but might not be able to get into the room to do so. The facility rearranged the room to remove that obstacle from the doorway. “That is not something you would pick up if you come in and do a one-time assessment for architectural barriers because it is part of the programmatic, day-to-day functioning of the clinic,” said Nehus.
She also recounted how when she went before the state’s Breast Health Advisory Committee to talk about ensuring that women with disabilities can get mammograms, she got resistance from the medical professionals who complained about having to tie down women with intellectual and
developmental disabilities to do the exam. “I was horrified because I had just been working in the area of sexual assault and violence against women with intellectual and developmental disabilities, and I knew what the rates were in that particular group,” said Nehus. “They are very high, and when these women come into situations where they have to remove their clothes and get up on a table, they are having some PTSD [posttraumatic stress disorder] and are resisting the exam.” She shared that experience with the physicians in what she called a spontaneous teaching moment.
Some of the obstacles her team found, such as shoving a trash can underneath a wheelchair accessible sink, thereby rendering it inaccessible, can only be addressed by having someone at each facility who monitors compliance with the Americans with Disabilities Act (ADA) and serves as an “access chief of police,” said Nehus. Short of doing that, she said, there is a need to have this kind of review built into Medicaid program licensing or managed care program contracts. “People do not have bad intentions, but they lack the ability to maintain a focus on access as their outcome, so it has to be tied to money in order for there to be a sustained focus on that as an issue,” Nehus noted.
People get fatigued when they must advocate for themselves every day, just as caregivers become fatigued, said Nehus. While the ADA provides for enforcement through civil litigation—the ultimate form of self-advocacy—Nehus sees this as a great way to sour a person’s relationship with their providers and health systems and not the way to go about remedying accessibility issues.
To provide some insights on the intersection of health disparities and disabilities from the health literacy perspective, Paasche-Orlow discussed the principle of universal precautions. Health literacy universal precautions, he explained, are the steps practices can take when they assume that all patients may have difficulty comprehending health information and accessing health services. Health literacy universal precautions are aimed at simplifying communication with and confirming comprehension for all patients so that the risk of miscommunication is minimized, making the office environment and health care system easier to navigate and supporting patients’ efforts to improve their health. Paasche-Orlow implored everyone to get the Agency for Healthcare Research and Quality’s (AHRQ’s) toolkit
9 This section is based on the presentation by Michael Paasche-Orlow, associate professor of medicine at the Boston University School of Medicine, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
for health literacy and universal precautions,10 which contains 21 three-to five-page tools that can improve spoken and written communication, self-management and empowerment, and supportive systems. The toolkit also contains appendices with resources such as sample forms, worksheets, and PowerPoint presentations. He noted that there have been a series of studies showing that practices can use this toolkit to change the way they interact with and empower patients (Brega et al., 2015; DeWalt et al., 2011; Mabachi et al., 2016; Weiss et al., 2016).
Universal precautions, said Paasche-Orlow, represent a significant departure from the normal practice of health care. In his opinion, they can serve as a critical step forward and serve as a key for how a health literacy mindset can be a driver for health equity. Universal precautions, he explained, come from a synergy of a mentality about patient safety and one of empowerment to drive health equity. He likened universal precautions and its emphasis on ensuring comprehension to the common practice in other areas of the service economy to confirm what the customer wants. “If you care that someone understands what you want them to do, you are going to have to check,” said Paasche-Orlow. “The basic principle is if you care, check.”
Asking patients if they have any questions is not an honest way to know if a patient truly has questions, for most patients assume this means the appointment is done and they need to leave so the doctor can get on to the next appointment. Instead, said Paasche-Orlow, the default position in health care must stop being that it is the patient’s responsibility to say he or she does not understand. “It has to be a positive obligation, a duty of the clinician to help the patient understand,” he explained, and an effective tool for doing so is the teach-back technique (Tamura-Lis, 2013). Using this technique, providers ask questions such as “How are you going to take this medicine?” and “How are you going to get here for your appointments, and what are the barriers?”
A central tenet of universal precautions is that it represents a deep recognition that doctoring is teaching, he said, and that teaching is empowerment. Universal precautions recognize that it is unsafe to make it the patient’s responsibility to ask questions. “It is the clinician’s positive duty to identify the questions, and there are always questions,” said Paasche-Orlow. The physician who does not check to ensure that a patient knows how to use an inhaler correctly, for example, has no idea if it will be used correctly. It is common, he added, for people to overestimate what they know in the health care context.
Paasche-Orlow recounted an experience he had where a postdoctoral
10 See http://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/index.html (accessed October 10, 2017).
fellow had a patient who he had been told was nonverbal by caregivers at the facility where the patient was living. It turned out the patient had a limited vocabulary and could in fact communicate verbally. “You have to find your learner,” was the lesson he took from that encounter. “If you find your learner you will identify where you can communicate and what the nature of that empowerment looks like. Eventually you can get yourself into the situation where you do not overestimate and you do not underestimate people’s skills and the ways you can empower them.”
One aspect of health disparities that interests Paasche-Orlow is the emphasis over the past decade on measurement. “Enough with measurement,” he said. “We do not need to describe this problem all that many more times. The issue is, what are we going to do about it?” His group, for example, has created a map that identifies pockets of health illiteracy, but he questioned the value of this map given that there is no number low enough to stop caring about the problem. In his mind, the same is true for health disparities.
In summary, Paasche-Orlow said that universal precautions are an ethos, and to attain the goals of health care, it is necessary to go beyond the basic process of diagnosis and recommending treatments. The basic system taught in medical school takes a biophysical approach to health care, one that emphasizes the importance of making the right diagnosis and treatment recommendations. “That is fine, but you have to go beyond that,” said Paasche-Orlow, which he said includes going beyond even a biopsychosocial approach to health care. “You have to make it into an empowerment approach, where the goals are to decrease suffering and improve dignity, not to make a recommendation no one can fulfill.”
He closed with some recommendations. The first was to establish universal precautions for patient comprehension as the system default. Doing so will require actively identifying and removing unnecessary complexity. “When you do this, when you have these experiences, the light will be shined on all the places in your practice where you have to proactively remove unnecessary complexity,” said Paasche-Orlow. He also recommended massively increasing resources for patient education and cultivating a culture in education empowerment in all health professions.
Beth Marks explained that the HealthMatters program empowers people with intellectual and developmental disabilities to learn about their bodies and to access opportunities to improve their health behaviors and health status where they live, work, learn, and play. The program is evidence based, and it focuses on helping community-based organizations (CBOs) support people with intellectual and developmental disabilities to incorporate a healthy lifestyle into daily living.
People with intellectual and developmental disabilities, she explained, have an increased risk of chronic disease and experience poorer health status than their peers without disabilities. Often, they have minimal if any access to physical activities, restricted opportunities to learn how to engage in fitness, and diets that are devoid of fruits and vegetables. They are also more likely to be obese or morbidly obese compared to adults without a disability. A likely cause of these disparities, said Marks, is that individuals with intellectual and developmental disabilities have not learned about their bodies in the context of their disabilities.
The HealthMatters program is not focused on weight loss (although people do lose weight if that is their goal). The program does support body diversity, and aims to counter the continuing belief among health care providers that individuals with intellectual and developmental disabilities are “sick” and are destined to be obese with chronic health conditions. “That is not the case; health promotion programs do work,” said Marks. Development of the HealthMatters program began in 1998 through a 5-year university-based exercise and health education clinical trial funded by the National Institute on Disability, Independent Living, and Rehabilitation Research–funded Rehabilitation Research and Training Center on Developmental Disabilities. Over this 5-year period, she realized that learning about exercise, physical activity, and nutrition was a perfect place to begin a dialogue across all health promotion activities. Core concepts in the program include self-determination, choice, self-efficacy, self-advocacy, rights and responsibilities, universal design, and universal design instruction. To date, HealthMatters and its approximately 120 partner organizations have certified more than 2,500 instructors in 30 states and several countries and reached more than 10,000 individuals. In 2010, the program began building an infrastructure for scaling up through a National Institute of Child Health and Human Development grant in Illinois and New Mexico, and it
11 This section is based on the presentation by Beth Marks, research associate professor in the Department of Disability and Human Development at the University of Illinois at Chicago, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
is currently conducting a statewide scale-up research project with University Centers for Excellence in Developmental Disabilities partners in Alaska, Illinois, Kentucky, and Missouri.
Two studies demonstrated the effectiveness of HealthMatters. From 1998 to 2003, a university-based program led by professionals increased adults with Down syndrome exercise self-efficacy and outcome expectations; boosted life satisfaction; increased cardiovascular fitness, strength, and endurance; and reduced cognitive and emotional barriers (Heller et al., 2004). A 2003 to 2008 study, in which the program was administered as a community-based train-the-trainer program (Marks et al., 2013), found that adults with intellectual and developmental disabilities had better perceived health behaviors, increased exercise self-efficacy and knowledge of nutrition and activity, improved cholesterol and blood glucose levels, and increased fitness and flexibility, and they benefited from better social and environmental supports for their exercise and nutritional needs. The train-the-trainer model, which engaged direct care workers supporting people with disabilities, did a much better job and produced results that were more sustainable. The initial expectation was that people needed to have a background in health education; however, a surprising study result documented that direct support caregivers who supported people with disabilities just needed to be strong advocates for the people they were supporting.
Current dissemination of the HealthMatters program begins by working with a CBO through three 90-minute webinars. A part of the process of working with CBOs involves teaching direct care workers in organizations about the laws relevant to individuals with disabilities and their health care services. “Many direct care workers in community-based organizations are not familiar with the Americans with Disabilities Act [ADA],” Marks said, or the ADA Amendments Act of 2008. Next, she and her collaborators work with CBOs to develop an organizational strategic action plan for health services and to certify three people within the organization to teach the 12-week HealthMatters exercise and nutrition health education curriculum to people with intellectual and developmental disabilities. The third step aims to support CBOs to develop community partnerships that support health-friendly communities inclusive of people with disabilities.
The HealthMatters exercise and nutrition health education curriculum works with individuals living with disabilities three times per week for 12 weeks and includes 36 interactive and 23 lifelong learning lessons. These lessons aim to help the participants understand attitudes toward health, exercise, and nutrition; identify current behaviors; develop exercise and nutrition goals; gain skills and knowledge about physical activity, exercise, and nutrition; and support each other (Marks et al., 2010). “Take the disability out, and it is applicable to everyone,” said Marks, who added that the HealthMatters curriculum is available for purchase online. Addition-
ally, as a part of the fee for service, CBO staff can also receive a train-the-trainer certified instructor webinar that teaches them to use the curriculum and start their own 12-week HealthMatters program. Participating states (Alaska, Illinois, Kentucky, and Missouri) receive the webinar and curriculum for free as part of the research program Marks is conducting with Jasmina Sisirak. She noted, too, that she and her colleagues have five other programs in various stages of becoming evidence based:
- HealthAdvocacy, to promote health for people with intellectual and developmental disabilities
- Peer to Peer HealthMessages Program, a peer-based program to learn about health behaviors
- HealthAlert, to give individuals the skills to observe and report early signs of health changes
- MyHealthVisit, to teach individuals how to communicate health care issues with providers
- HealthMatters4Kids, to help parents, teachers, and providers recognize the importance of teaching children about exercise and nutrition in order to prevent diabetes and chronic conditions
COMMONWEALTH CARE ALLIANCE: INTEGRATED CARE FOR LOW-INCOME ELDERS AND INDIVIDUALS WITH DISABILITIES12
Commonwealth Care Alliance, explained Toyin Ajayi, serves a population of dual-eligible individuals comprising low-income seniors and low-income adults ages 21 to 64 with disabilities, severe persistent mental illness, or multiple chronic illnesses or functional and cognitive limitations. Racial and ethnic minority groups are overrepresented in this population and experience significant disparities in accessing needed health care services and in life expectancy, particularly for the subset of this population with severe persistent mental illness, said Ajayi. Dual-eligible individuals represent some 15 percent of the Medicaid population and 20 percent of the total Medicare population, but account for more than 40 percent of Medicaid’s expenditures and 30 percent Medicare’s spending. In Massachusetts, dual-eligible individuals account for even higher percentages of total Medicaid and Medicare spending, she noted.
As an example of who Commonwealth Care Alliance serves, Ajayi described one of her clients. Jack is a 55-year-old active smoker with traumatic brain disorder who suffers from schizoaffective disorder, sei-
12 This section is based on the presentation by Toyin Ajayi, chief medical officer at Commonwealth Care Alliance, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
zure disorder, morbid obesity, hypertension, hyperlipidemia, and chronic hepatitis C. He takes 15 medications daily, including three antipsychotics, and is only intermittently compliant, in part because of drug side effects but also because it is likely he does not fully understand how to take his medications. Jack lives in a group home and is independent regarding activities of daily living but needs frequent prompting, particularly for his personal hygiene. He receives skilled nursing visits several times per day, and has for several years, though Ajayi said it was unclear why he was receiving so many visits other than to provide additional support.
Jack comes to see Ajayi every month for medication refills and orders, but she said she feels powerless to knit together all the pieces of his care and help him navigate a system that forces him to receive his behavioral care at another location, does not allow her to see his behavioral health records, and often does not inform her when he visits the emergency department. Often, he comes to her with an acute issue, and she rarely gets to his routine or preventive care. Ajayi noted that Jack sees a community case worker through his behavioral health provider, with whom she has never spoken, has three insurance cards—Medicaid, Medicare, and a pharmacy benefit card—and sees an average of eight different outpatient providers per year. In 1 year, she said, Jack visited the emergency department 22 times and was admitted 5 times for a psychiatric issue and 5 times for an acute medical issue. “We ask ourselves, is this person getting what he needs from the health care system?” said Ajayi. “How many people are involved in his care, and what does an ideal care structure look like for him? How does he perceive his care? What is he receiving, what is his experience of the system?”
Her organization focuses its programs exclusively on individuals such as Jack, providing integrative care for dual-eligible individuals. One program is a senior care options program that functions as a dual-eligible Medicare Advantage special needs plan and has some 7,000 members across Massachusetts. This program receives a fixed amount of dollars per month from Medicare and Medicaid to provide all of these individuals’ needs, including physical acute and outpatient care, behavioral health care, and long-term supports and services such as home health care, personal care attendants, chores, food, and nonmedical transportation. Approximately 75 percent of the elders in this program meet nursing home criteria based on their functional activities of daily living needs and their disabilities, but 99 percent of them live in the community with a significant amount of support.
Some 62 percent of those enrolled in Senior Care Options speak a primary language other than English—more than 25 primary languages are spoken by the members—and two-thirds did not complete high school. More than 65 percent report their general health status to be “poor” or “fair,” 70 percent have four or more chronic conditions, and 45 percent
have three or more impairments in activities of daily living. This program’s enrollees are 51 percent white and 49 percent African American or other.
In 2013, Massachusetts became the first state to start a financial alignment demonstration for dual-eligible individuals under age 65, which led to her organization creating the One Care program. Approximately 70 percent of the 10,000 individuals enrolled in One Care have a mental health diagnosis—45 percent have depression and 15 percent have schizophrenia—and 7 percent are homeless, with many more who are marginally housed. Almost 15 percent have a current or prior substance or alcohol dependency. Ajayi noted that One Care covers 80 percent of the state’s total enrolled under-65 dual-eligible population, and the average cost of care per member per month exceeds $2,000, with high rates of “unmet need,” particularly in primary care and long-term supports and services. “These are folks who do not know what they could qualify for,” said Ajayi. “They do not know that they could get help getting washed and dressed. They do not know that they could get help with transportation to their appointments. They have not accessed the system, partly because of stigma associated with actually engaging with the health care system, as well as the fact that we have never had an integrated delivery model where somebody is responsible for ensuring that this person received what they need.” Some 68 percent of this group is white, and 32 percent is African American or other.
Commonwealth Care Alliance delivers care through what it calls primary care redesign, which aims to improve the quality of primary care delivered to people with complex medical, behavioral health, and social needs. As a single-payer source, the organization has the perspective and ability to align incentives, Ajayi explained, which enables her and her colleagues to provide coordinated care and build a network to provide care for each beneficiary. Primary care is delivered in multidisciplinary teams with both professional and nonprofessional care, and on-the-ground staff at key hospitals and post-acute care settings actively manages care transitions to ensure continuity of care and return to community living. The program relies heavily on community health workers as navigators, to provide motivational interviewing and support for the beneficiaries, and to serve as partners with primary care providers. The program fully integrates physical and behavioral health with long-term supports and services to decrease preventable acute care utilization and provide person-centered care rooted in the principles of independent living and disability rights, cultural competency, trust building, and shared decision making.
The final piece of these programs, she said, is flexible, accessible, and proactive end-of-life care that encourages early engagement in palliative care and supports death in the community whenever possible. “Listening to people’s wishes and honoring those wishes at the end of life is sometimes
the hardest thing for the health care system to do, and we feel obliged to do that,” explained Ajayi.
These programs, she said, represent an unprecedented level of collaboration between the Commonwealth of Massachusetts, the federal government, and the participating entities to share the challenges of filling the void for people with disabilities. Commonwealth Care Alliance has built four primary care practices across Massachusetts to provide primarily home-based primary care for individuals who have difficulty accessing the hospital or clinic. It has also created two subacute psychiatric facilities to better serve its members who could be equally or better served at a fraction of the cost of hospitalization. Two crisis stabilization facilities to provide alternatives to inpatient psychiatric hospitalization were also created. Commonwealth Care Alliance has also developed a community paramedicine program that sends paramedics to clients’ homes to treat them for acute illnesses and avoid trips to the emergency department.
For someone like Ajayi’s patient Jack, the One Care program creates a single integrated care delivery system. Today, Jack has a nurse practitioner care manager who coordinates with his primary care provider and specialists. He is admitted to One Care’s facilities when he needs psychiatric stabilization, and his medications are delivered in blister packs and automated medication boxes to enable him to take his medications independently. Jack has a personal care attendant to help him with his activities of daily living and a health outreach worker to support his transportation needs, as well as home nursing care. He has also been enrolled in a day program. The effect of this coordinated care is that Jack is starting to trust the health care system to meet his needs.
One Care’s early results are promising, said Ajayi. Total costs of care for One Care enrollees are decreasing, most notably for those individuals with severe persistent mental illness. The program has been able to make significant investments in long-term supports and services to address unmet needs and increase spending on outpatient behavioral health services, which has led to a decrease in utilization of acute psychiatric facilities. The consumer experience, she noted, has been extremely positive, and there has been very low voluntary disenrollment.
Ajayi and her colleagues have also been learning about strategies to engage support and care for these populations with the most complex needs and socioeconomic vulnerabilities. All this work, for example, has been possible because of the alternative payment model this program uses, and she called for increased funding to support and evaluate programs that take advantage of alternative payment models. She also recommended that social determinants of risk should be incorporated into risk stratification models to ensure that the appropriate resources are invested in caring for individuals with complex social needs, particularly those with disabilities.
Ajayi noted the need for improved access to training for clinical and nonclinical professionals and workers on how to engage in an interdisciplinary team approach to care. Disability competency and person-centered approaches to care should be core components of any curriculum, she added. She also singled out the need for policy solutions to decrease barriers to interdisciplinary communication and collaboration, while continuing to safeguard patient privacy.
THE NEW YORK STATE INITIATIVE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: AN INNOVATIVE SERVICE MODEL FOR CRISIS PREVENTION AND RESPONSE13
As the payment systems associated with Medicaid begin shifting from models that rely on institutions and high-intensity settings to models of support for people that are much more community based, New York has been working to develop a new type of safety net for people with intellectual and developmental disabilities who find themselves in a behavioral health crisis, explained Katherine Bishop. In the past, such crises were handled in the state’s Developmental Centers, but these have closed, creating a great deal of disparity around treatment of people with developmental disabilities who are seeking access to mental health and behavioral health services in communities where there has not been a sufficient understanding of the special needs of this group of individuals. Consequently, those working in the mental and behavioral health system began expressing that people with developmental disabilities who entered the behavioral health setting were disruptive and unable to be supported effectively; there was an expectation that all the needs of a person with developmental disabilities should be supported in the Individuals with Developmental Disabilities system. At the same time, people in the state’s developmental disabilities system were often not sufficiently knowledgeable about the behavioral health challenges a person might have. The result was that people would be stuck in emergency departments for long periods of time because they were not connected to the right level of community-based support, or they would go into inpatient settings for long periods of time because of a lack of long-term supports and services in the community.
The bottom line, said Bishop, was that some areas of New York were doing a good job creating pilot programs that were effective at working with individuals with intellectual and developmental disabilities who had
13 This section is based on the presentation by Katherine Bishop, director of program development in the Division of Person-Centered Supports at the New York State Office for People with Developmental Disabilities, and the statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.
behavioral health challenges, and there were other regions in the state where individuals with intellectual and developmental disabilities had difficulty accessing even basic mental health services. In part, this problem had fiscal roots, where the state had trouble getting the right resources to those who needed supports at the right time. There were individuals, for example, who were on a waiver in the state’s developmental disabilities system, but their presenting systems decreased their access to some community-based services. “Unintegrated supports and services and access to mental health and behavioral health care really became a deterrent, and the payment structures did not fit,” explained Bishop.
New York’s response to this situation was to look at evidence-based or evidence-informed models that would create a consistent statewide capacity for effective crisis prevention and response, incorporate evidence-informed treatment approaches, and monitor outcomes at an individual and systems level using consistent data reporting systems. New York’s Office for People with Developmental Disabilities researched and chose the University of New Hampshire (UNH) Center for START (Systemic, Therapeutic, Assessment, Resource, and Treatment) Services model. The Center for Start Services is operated through UNH’s University Center for Excellence in Developmental Disabilities (UCEDD). The model is operated in several states and is evidence informed. The result of this effort, said Bishop, is New York’s Systemic, Therapeutic, Assessment, Resource, and Treatment (NY-START) system. START, a specialty care coordination model for people who are struggling to get the right level of support from the health care system, employs data-driven, evidence-informed, person-centered practices and outcome measures and includes the following core elements:
- Implementation of multilevel cross-system linkages at the local, statewide, and national level by trained START coordinators
- Consultation, assessment, and service evaluation to augment the existing system of support
- In-home therapeutic supports for clients ages 6 years to adult
- Site-based therapeutic resource centers for individuals age 21 or older
- Crisis support that is available 24 hours per day, 7 days per week
- Team response time of 2 to 3 hours
- Clinical education teams, online training forums, and family support and education
The START model does not replace elements that already exist in the system, but rather identifies gaps in the system and provides linkages, training, and education to augment the current system. The idea, Bishop explained, is not to replace parts of the system that were already effective
at times of crisis response, but to build on those parts. The START model starts with a gap analysis of the system, asks how the system is working for people with developmental disabilities and behavioral needs, and then starts to build connections and linkages to fill those gaps.
Previous speakers had noted the importance of looking at the bio-psychosocial elements of a model, and START coordinators, said Bishop, dig into the specific nature of what might be driving the events that bring a person to crisis so that an effective crisis plan can be developed to diminish those crises. The model includes in-home therapeutic supports for people ages 6 years and older to provide special training in the home environment specific to an individual’s behavioral health needs. START has a 24-hour-a-day crisis support system to provide an immediate response when needs increase during an acute crisis, and it is also in the process of implementing site-based therapeutic resource centers where someone can access stabilization support of 30 days or less rather than ending up in a hospital if not clinically needed. START’s clinical education teams and online learning system create a learning environment for all the state’s developmental disability and mental health providers. The goal of the model is to reduce the time that people spend in tertiary interventions and increase the amount of primary intervention that occurs and reduce the negative outcomes for a great number of individuals. Bishop noted that the START program fits into the state’s reform efforts—the Delivery System Reform Incentive Payment (DSRIP) program—to move to a value-based payment methodology that will help people achieve positive health outcomes through integrated and appropriate care (see Box 5-1).
Early results from the two START teams operating in the state, one in western New York (region 1) and the other in the Hudson Valley (region 3), show an almost 20 percent reduction in psychiatric inpatient use in region 1 and a nearly 40 percent reduction in region 3. Emergency department use has fallen by about 30 percent in region 1 and 43 percent in region 3 for the specific individuals engaged in the START service, based on pre- and post-START service data.
As an example of how NY-START works, Bishop described the case of a young girl, age 9, who had a diagnosis of autism and obsessive-compulsive disorder. This individual was having repeated admissions to psychiatric hospitals and had used the emergency department at least 10 times. She was losing her school placement because her behavioral challenges in the school setting were so significant and her family was struggling with providing her care. The NY-START team engaged the girl and her family, focused on conducting an additional assessment, developed an effective plan of crisis response, and connected her to waiver servicers so that she was able to access supports and services in the home setting. As a result, the need for emergency department visits and hospitalizations vanished, in
large part because her parents had someone to call who was knowledgeable and trained to understand the behavioral health elements of her support. Over time, the need for those calls fell sharply too.
Connie Robb from the University of Maryland asked Ajayi what sources of funding the Commonwealth Health Alliance has. Ajayi replied that the Alliance receives a blended Medicaid and Medicare premium that is risk-adjusted for each member it enrolls. Those resources are pooled to support a
staff of about 800 people and to contract with network providers to support the enrollees. Each member, she added, has a care manager paid by the plan.
Tom Wilson asked Paasche-Orlow for information about who conducts universal precautions training, if there are resources available, and if there are data on the effectiveness of universal precautions. Regarding data, there have been several publications, two in 2016 and one in 2015 (Brega et al., 2015; Mabachi et al., 2016; Weiss et al., 2016), that evaluated the AHRQ toolkit when it was introduced to community-based practices. Aside from the toolkit, there are few resources available for training. Paasche-Orlow explained that the notion he has is that doctors and other health care providers would have a responsibility to confirm that people understand all the aspects of their care. In his opinion, the shift in payment models to a population-based payment scheme will force systems to support the education and empowerment of consumers to take responsibility for their health and enforce the universal precautions principle. He added that physicians may not be the right group of providers to train—he has found them reluctant and the hardest group to work with—and instead he involves other team members, such as clinical pharmacists. In his experience, clinical pharmacists are eager to have a role in patient education and empowerment and have been the most enthusiastic providers that he has engaged. Nurses, he noted, are also good candidates.
An unidentified participant asked Ajayi if her model deals with the provision of housing or housing assistance, given the high number of homeless and marginally housed individuals in her program’s target population. Ajayi replied in the affirmative and said that community health workers are “incredibly effective” with the right training in providing navigation for housing resources. Her program has also built a close relationship with the housing authority in Western Massachusetts in which her program conducts a five-course class for beneficiaries that teaches them budgeting and about their responsibilities, duties, and rights as tenants. Upon completion of the course, the participants receive a certificate that they take to the housing authority. Given that it costs the housing authority between $1,500 and $5,000 to clean and turnover an apartment, the housing authority looks at the certificate holders as more likely to stay in an apartment. She also explained that the marginally housed population consists of people who have not been at the same address consistently for more than 12 months. Typically, they have been sleeping at the homes of relatives and friends and staying in shelters.
Another participant asked Ajayi how her program assesses people for the services they need, whom the program hires as personal care attendants, and what level of need the program addresses. Ajayi replied that assessments are carried out by long-term services and support coordinators employed by partner agencies. Personal care workers vary depending on the client. In the Hispanic population, clients prefer to have family caregivers as
their personal care attendant, so the program trains those individuals and pays them, in some cases directly, in other cases through local agencies. In other communities, the program uses agencies to provide personal care attendants. She noted that the personal caretaker is a self-directed benefit, and the beneficiaries in her program effectively become small business owners employing people on a daily basis. Recognizing this, the program provides supports and training for its clients on how to manage that workforce, and it partners with community-based organizations to provide oversight in cases where the client wants to delegate that authority.
Linda Harris from the Office of Disease Prevention and Health Promotion at HHS commented that one of the premises of health literacy is to involve the user in the design of messages and tools. She noted that she was struck by how HealthMatters involves its clients and uses peer-to-peer learning, and asked Marks if she could elaborate on that aspect of her program. Marks replied that peer-to-peer learning was developed after 10 years of experience with HealthMatters and based on what she and her colleagues had learned in working with and getting feedback from their clients with intellectual and developmental disabilities. In particular, Harris was surprised by how much health education was not happening on the health care provider side.
Paasche-Orlow commented that young people with intellectual and developmental disabilities are assessed by the education system and provided with an individual education plan independent of anything the health care system does. In his view, there is an opportunity for the health care system to reach out to the educational system to help identify the learning needs of this target population. In the same vein, he suspects there are ways of tapping into the work other sectors are doing to identify those individuals who experience housing or food insecurity. Marks responded that she has colleagues who ask for a health and wellness goal to be included in their patients’ individual education plan.
Marks then noted, regarding individual education plans, that many of her programs’ clients express concern about being embarrassed in physical education classes. This is one reason why she believes the program’s beneficiaries do better learning about exercise in a community-based organization setting rather than at the local YMCA or recreation center, where they may feel out of place and not welcome.
Silvia Yee asked the panelists who they thought should have the overarching responsibility to make sure that patients understand and receive all the long-term services and supports they need. Nehus replied that in medical home-based systems, the community-based developmentally disabled providers are given that responsibility, and they are rewarded financially if they meet or exceed specified quality metrics. She said that changes in the payment system will provide incentives to coordinate these services more
effectively and achieve better health outcomes. Paasche-Orlow said that this is a tricky area to connect with incentives and penalties, and to make his point he noted that value-based purchasing programs are systematically taking money out of the public hospitals that care for the most vulnerable patients. “That is not the design of these programs, but that is what is happening,” said Paasche-Orlow. “It is a worrisome, unintended consequence of these penalty programs, but at the same time, without aligning incentives it is going to be incredibly hard to move the system.”
Ajayi added that in her opinion the goal is to make this everyone’s responsibility, including the patient’s, by aligning incentives with the proviso that the goals of alignment meet the needs of the patient. “I cannot want anybody with diabetes to be better controlled more than they want it to be controlled,” she said. “If this person is not interested in managing their hemoglobin A1C, is it because they do not understand how important it is, or is it because they are too busy worrying about problem A, B, C, and D? I need to engage with them and partner with them on those problems, just as much as I need to impress on them the importance of their diabetes.” She noted that she is a strong proponent of developing payment models that ensure alignment of everyone who touches a patient in the system. In this way, (1) the primary care provider is invested in ensuring that a person not only gets his or her prescription filled, but also takes the medication and benefits from it, (2) the hospital that discharges a patient is invested in ensuring that the patient does not return to the hospital with some preventable condition, and (3) the skilled nursing facility the patient goes to after discharge is invested in making sure the patient does not return to the hospital for something preventable.
Bishop noted that New York’s developmental disability system is in the planning phase with value-based payments, and one element on which it is focusing is the need to have some measures that are specific to a person’s access to self-determination in their support plan. Doing so, she said, will help ensure that any payment scheme will look at outcomes from both a health and quality of life perspective. In New York, one such metric being considered would provide a consistent personal outcome measurement using a reliable interviewing process developed by the Council on Quality and Leadership. This process looks at the frequency of occurrence as a person’s desired level of achievement in specific domains.
Charles Drum from the Institute on Disability at UNH noted that the Interagency Committee on Disability Research is preparing a draft of a government-wide strategic plan for disability, independent living, and rehabilitation research that will try to coordinate activities by a number of different federal agencies. He encouraged the roundtable members to review the draft plan and make comments when it was released for additional public comment in July 2016. “For researchers and others involved in dis-
ability issues, I think the plan could be well informed by your knowledge and experience,” he said.
Drum then asked Marks to address the need for collecting data in the long term on people participating in community-based health promotion programs. Marks replied that she has been thinking about who owns the data, and she believes it belongs to the person with a disability, in the case of her program. “The data should have meaning to them and the services that they get,” she said. “So, with all of our programs, if we cannot come up with questions that are useful for people themselves in the community, then it is not worth us asking.”
Marks also explained that her program has developed an online forum for before and after the 12-week program so that organizations can have those data in order to get more funding for their program. “The reason we did it that way is because we cannot engage people at the site to be researchers; it takes too much money and effort.” In her opinion, this approach is the next best thing to doing formal program evaluation.