MLTSS for People for Intellectual and Developmental Disabilities: Strategies for Success

Managed Long-term Services and Supports (MLTSS) 
MLTSS for People for Intellectual and Developmental Disabilities: Strategies for Success
https://bit.ly/2L8obcg 
The National Association of States United for Aging and Disabilities (NASUAD), along with the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and Ari Ne’eman of Mysupport.com are the authors of this important report MLTSS for People for Intellectual and Developmental Disabilities: Strategies for Success. 
Because there are unique challenges in implementing a managed long-term services and supports (MLTSS) program for people with intellectual and developmental disabilities (I/DD), the report provides context on the intersection of program design and participant advocacy and outlines successful strategies for both states and health plans. Promising practices from the few MLTSS programs delivering I/DD services are highlighted throughout.  Check it out if your state is engaged in MLTSS or is thinking about/planning for the transition.  

Opportunities for Improving Programs and Services for Children with Disabilities 

Health Services 
Opportunities for Improving Programs and Services for Children with Disabilities 
Source: https://bit.ly/2k3LxDF 
While a variety of services and programs exist to support the needs of children with disabilities and their families, a focus on achieving specific near- and long-term goals that help prepare for adulthood and coordination of care within and across service sectors are integral to encouraging healthy growth and development, says a new 
report from the National Academies of Sciences, Engineering, and Medicine.  The committee that conducted the study and wrote the report examined federal, state, and local programs and services in a range of areas, such as health care, special education, transition to adulthood, vocational rehabilitation, and social needs care.

Responsive Practice | Institute on Disability/UCED

“Responsive Practice builds on knowledge that providers already have and identifies opportunities to maximize wellness for individuals with disabilities,” explains Kimberly Phillips, DPH Principal Investigator and co-author of the training.” 

Source: Responsive Practice | Institute on Disability/UCED

Responsive Practice 
Responsive Practice: Providing Health Care & Screenings to Individuals with Disabilities 
https://bit.ly/2ryQ30t
The New Hampshire Disability and Public Health (DPH) project’s Responsive Practice training is now available online, on-demand, and is free for a limited time. Responsive Practice enhances health care providers’ ability to deliver disability-competent care that is accessible to people with intellectual, mobility, and other disabilities.

Health conditions, functional status and health care utilization in adults with cerebral palsy

Family Practice, 2018, 1–10
doi:10.1093/fampra/cmy027

Robert J Fortuna1,*, Ashley Holub2, Margaret A Turk3, Jon Meccarello4 and Philip W Davidson4

1 Departments of Internal Medicine and Pediatrics and
2 Department of Public Health Sciences, University of Rochester, Rochester, NY, USA,
3 Department of Pediatrics and Physical Medicine and Rehabilitation, State University of New York Upstate Medical University, Syracuse, NY, USA and
4 Department of Pediatrics, Neurodevelopmental and Behavioral Pediatrics, University of Rochester, Rochester, NY, USA

*Correspondence to Robert J. Fortuna, Departments of Internal Medicine and Pediatrics, School of Medicine and Dentistry, University of Rochester, Rochester, NY, USA; E-mail: robert_fortuna@urmc.rochester.edu

Abstract

Aim. Health conditions in children with cerebral palsy (CP) are well described, yet health is less defined with advancing age. We examined health conditions, functional status and health care utilization in adults with CP across age groups.

Methods. We collected cross-sectional data on health conditions, functional status and utilization from the medical records of adults with CP across a large university-affiliated primary care network using the Rochester Health Status Survey IV (RHSS-IV), a 58-item validated survey. Data from the National Health and Nutrition Examination Survey and National Health Interview Survey provided prevalence estimates for the general population as comparison.

Results. Compared to the general population, adults with CP had higher rates of seizure disorder, obesity and asthma across all ages. Adults with CP under 30 years of age had higher rates of hypertension (16.7 versus 5.6%; P = 0.04), urinary incontinence (41.7 versus 10.5%; P < 0.001) and depression (16.7 versus 6.9%; P = 0.07). Conversely, there were lower rates of alcohol misuse, tobacco/nicotine and sexually transmitted illnesses. Independence with all activities of daily living decreased from 37.5% at 18–29 years of age to 22.5% in those 60 and over. Seizure disorders, urinary incontinence and gastroesophageal reflux disease were all independently associated with lower functional status. As expected, health care utilization increased with advancing age.

Conclusions: Adults with CP should be monitored for conditions occurring at higher prevalence in CP, as well as common conditions occurring with advancing age. Age-related functional decline should be anticipated, especially with coexisting seizure disorders and urinary incontinence.

Health services use and costs for Americans with intellectual and developmental disabilities: A national analysis

Fujiura, G. T.,Li, H., & Magana, S. (2018) Health services use and costs for Americans with intellectual and developmental disabilities: A national analysis. Intellectual and Developmental Disabilities. 56, (2) p. 101–118. DOI: 10.1352/1934-9556-56.2.101

Abstract

Health services and associated costs for adults with intellectual and developmental disabilities (IDD) were nationally profiled and the predictors of high expense users statistically modeled. Using linked data from the National Health Interview Survey and Medical Expenditure Panel Survey for the years 2002 through 2011, the study found a mixed pattern of differences in rates of service use and costs when compared to the general population depending upon personal characteristics, health status, and type of health care service. Prescription medication costs were the primary driver of total health care expenditures for Americans with IDD. The presence of secondary chronic health conditions and poor mental health status were the consistent predictors of high expense users across types of health care. Study results are discussed in terms of implications for more nuanced evaluations of health care costs and need for recurring surveillance of health care for Americans with IDD in the years following passage of the Patient Protection and Affordable Care Act.

Impact of Medicaid Managed Care on Illinois’s acute health services expenditures for adults with intellectual and developmental disabilities

Yamaki, K., Wing, C., Mitchell, D., Owen, R. & Heller, T. (2018) Impact of Medicaid Managed Care on Illinois’s acute health services expenditures for adults with intellectual and developmental disabilities, Intellectual and Developmental Disabilities, 56 (2), p. 133–146. DOI: 10.1352/1934-9556-56.2.133

Abstract

States have increasingly transitioned Medicaid enrollees with disabilities from fee-for-service (FFS)to Medicaid Managed Care (MMC), intending to reduce state Medicaid spending and to provide better access to health services. Yet, previous studies on the impact of MMC are limited and findings are inconsistent. We analyzed the impact of MMC on costs by tracking Illinois’s Medicaid acute health services expenditures for adults with intellectual and developmental disabilities (IDD) living in the community (n ¼ 1,216) before and after their transition to MMC. Results of the difference-in-differences (DID) regression analysis using an inverse propensity score weight (IPW) matched comparison group (n¼1,134) design suggest that there were no significant state Medicaid cost savings in transitioning people with IDD from FFS to MMC.

Mayo Clinic Alumni Association | ‘It can be done:’ Mayo Clinic School of Medicine evolves, accommodating a student’s disabilities

When Leah Grengs Thompson, M.D. (MED ’17), was 6 years old, the Americans with Disabilities Act (ADA) became law. The ADA prohibits discrimination against individuals with disabilities in all areas of public life including jobs, schools, transportation.

leah grengs thompson

Leah, age 11

When Dr. Thompson was 11, she had a hemorrhagic stroke due to a benign brain tumor. Despite surgery, rehabilitation and years of therapy, she has permanent deficits including left-sided leg and arm weakness and significant vision loss.

Thanks to the ADA, she was accommodated through the years of her education but accepted that she was unable to do some things — play sports and drive, for example. She says she found her niche while volunteering at a Twin Cities hospital, near where she grew up.

“I hadn’t felt like I could do anything particularly well,” she says. “That changed when I started at the hospital. I loved working with patients and their families.

“I always assumed I wasn’t smart enough to be a doctor. My parents hadn’t gone to college, and I didn’t personally know anyone in medicine. When I started college and studied biology, I realized I was smart enough and became determined to go to medical school.”

A thriving undergrad

Dr. Thompson thrived at the University of Minnesota — inside and outside of the classroom —and earned bachelor’s degrees in neuroscience and anthropology and graduated summa cum laude. She received numerous scholarships:

  • Pediatric Brain Tumor Scholarship
  • Children’s Hospitals and Clinics of Minnesota Volunteer Services Scholarship
  • College of Biological Sciences Volunteer Award
  • University of Minnesota Access Abroad Scholarship
  • University of Minnesota Learning Abroad Center Scholarship
  • University of Minnesota Women’s Club Stephanie R. Boddy Scholarship
  • University of Minnesota Women’s Club Doris Doeden Scholarship
  • J.A. Wedum Foundation Scholarship
  • University of Minnesota President’s Student Leadership and Service Award

She traveled to Bolivia to assist in establishing clinics in impoverished rural communities and tutored at a homeless shelter in Minneapolis.

Dr. Thompson took the MCAT three times. “In college, I’d always sought accommodations and gotten extra time for exams due to my vision problems,” she says. “I was stubborn and didn’t ask for accommodations in taking the MCAT. I studied hard yet did poorly. I had trouble reading the passages. After I applied for accommodations, I did very well.”

Despite her successes, Dr. Thompson says she was so worried she wouldn’t get accepted to medical school due to her disabilities that she applied to 40 schools, using up all of her savings.

“I read the technical standards of the schools I applied to. They were difficult to interpret and understand,” she says. “I let all of the schools I interviewed at know about my physical limitations in advance. At a few schools, including Mayo, I met with a specialist to discuss my situation. This told me they took it seriously and would likely work to accommodate me.

“Mayo was where I really wanted to go. I jumped up and down when I was accepted.”

A self-accepting med school student

mayo clinic school of medicine

Leah Grengs Thompson, M.D., on Match Day

Dr. Thompson says she was shy at first with her medical school classmates. “I didn’t want to appear to need extra help or extra time for exams,” she says. “At Mayo Clinic, I learned to be more open and accepting of myself. Sometimes I can’t believe how lucky I am to have been able to go to medical school and do exactly what I want to do.”

To be able to do exactly what she wanted, though, is part of the spirit of the ADA.

A place of public accommodation

mayo clinic school of medicine

Robin Molella, M.D.

“Education is a place of public accommodation because we believe everyone has a right to be educated,” says Robin Molella, M.D. (MED ’90, I ’97, PREV ’99), director of Health, Disability & Accommodations for Mayo Clinic School of Medicine and a consultant in the Division of Preventive, Occupational and Aerospace Medicine at Mayo Clinic in Rochester. “The ADA started learning institutions down this path almost 30 years ago.”

Dr. Molella says Mayo Clinic School of Medicine has a history of accommodating individuals and, compared to other medical training institutions, “We’re quite far in this journey,” she says. “However, it’s not far enough. There’s pervasive ableism in medicine. And there’s a new desire to think about whether or not we’re doing everything we can to make our physician workforce as diverse as possible. Are we opening the doors of medical schools to more and more highly competent people who would be fabulous physicians?”

According to a recent New York Times story, more than 20 percent of the American population has a disability but as few as 2 percent of practicing physicians do. Most of those physicians acquired their disabilities after completing their medical training. Additionally, few people with disabilities are admitted to medical school, and those who are have higher attrition rates than nondisabled students. Why? Because they don’t always receive the support they need despite the ADA. Further, only one-third of medical schools explicitly state their support of accommodations for disabilities on their websites.

Every medical school determines its own technical standards, the cognitive and physical abilities required for admission. Mayo Clinic College of Medicine and Science has a robust Accommodation for Disabilities policy, which states that it will make reasonable effort to accommodate students, residents, fellows and postgraduates with disabilities as defined in Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990. Any student with a physical, psychiatric, sensory or learning disability may request reasonable accommodations after providing adequate documentation from appropriate licensed professionals to the Mayo Clinic College of Medicine.

“What do providers really need to be able to do?” asks Dr. Molella. “We must continuously ask what learners need to accomplish in medical school to define them as a physician. Not every physician needs the dexterity of a surgeon. If you plan to become an adult neurologist, must you catch babies in OB rotation? Are you disqualified if you can’t hold retractors for hours in surgery? How much of the shared training legacy in medical education is really necessary? We need to challenge our assumptions and better accommodate completely competent individuals with technology, for example, to ensure a diverse workforce.”

Working step by step, technical standard by technical standard to accommodate

Dr. Molella says Mayo Clinic School of Medicine was fully aware of Dr. Thompson’s limitations when she was admitted. “But we weren’t sure how we’d make it work,” she admits.

mayo clinic school of medicine

Alexandra Wolanskyj-Spinner, M.D.

Alexandra Wolanskyj-Spinner, M.D., (I ’95, HEMO ’98), senior associate dean for student affairs for Mayo Clinic School of Medicine since 2013 and a consultant in the Division of Hematology at Mayo Clinic in Rochester, had not yet encountered a student with physical challenges quite like Dr. Thompson’s when she entered the medical school.

“I saw this extremely bright, talented person pursuing medicine for the right reasons,” says Dr. Wolanskyj-Spinner. “How could we best help her to succeed?”

Dr. Wolanskyj-Spinner arranged for Dr. Thompson to meet with two Mayo physicians who have physical challenges to discuss how they have succeeded. She also arranged for the new medical student to meet with the student health and disabilities accommodations officer, Dr. Molella.

“Step by step, technical standard by technical standard, they came up with creative ways to help Leah succeed,” says Dr. Wolanskyj-Spinner, a consultant in the Division of Hematology.

She says, increasingly, students with disabilities will be applying for medical school. “They’ve been accommodated through higher education because of the ADA, and they want the same opportunities as anyone else. They’ll be our colleagues. This presents an opportunity for greater understanding and a shift in our education and culture. Mayo Clinic always spearheads the noblest of intentions.”

An evolving medical school

leah grengs thompson

Leah Grengs Thompson, M.D., at graduation with Fredric Meyer, M.D., executive dean for education, Mayo Clinic College of Medicine and Science

Dr. Thompson’s medical school journey wasn’t without bumps. A resident judged her harshly as a result of her physical limitation in an evaluation, using language that Dr. Wolanskyj-Spinner describes as judgmental and insensitive. “I asked the clerkship director to look at the evaluation and determine if it had unfairly affected Leah’s grade. He agreed it was inappropriate and changed the grade to reflect her overall performance. Situations like that provide us with opportunities to learn and better educate all of our learners and faculty members. Leah helped us look at ourselves and our practices, and we evolved and became more open minded. She took us to a place of greater possibilities and acceptance. We developed and standardized new processes and can better serve our diverse students in this regard, which is a priority for our school.”

According to Dr. Wolanskyj-Spinner, Dr. Thompson’s effect on how the school approaches disabilities is only a small part of her legacy. “Leah was integral to many initiatives to improve the quality of life for our students. She played important leadership and advocacy roles including serving on the Student Life and Wellness Committee and the Student Support Advisory Board, and spearheading our student lounge remodeling and My Story program. She enriched our school, her peers and my life. She’s an incredibly compassionate, empathetic person, which is extremely important in medicine, and I am proud to call her my colleague.

“I’m excited to watch Leah as she continues to knock down barriers and break glass ceilings. She will be a leader in her field. She left a permanent legacy at our school.”

A future without heroic effort

Dr. Molella points out that the medical school will have succeeded when students such as Dr. Thompson don’t have to be more courageous or heroic than any other medical student to succeed in medical education.

“Leah overcame incredible adversity to accomplish what she did. It really shouldn’t take that,” says Dr. Molella. “We have to make it easier to achieve this success without double or triple the effort anyone else has to put forth. That will happen when we continuously value diversity and make accommodations. What we gain in the end is so precious and valuable. Not a single person in Leah’s class will look at a person with a disability the way they would have without her in their class. Many vulnerable patient populations will be grateful to have physicians who better understand them and the challenges they face.

“Leah’s story is a success because of her. She had the stamina, willingness and desire to make it work despite the hurdles. Her success shows us it can be done.”

Dr. Thompson’s new chapter

mayo clinic school of medicine

Leah Grengs Thompson, M.D., with her husband, Daniel, at her graduation from Mayo Clinic School of Medicine

Today Leah (Grengs) Thompson, M.D., is a resident in psychiatry at the University of North Dakota in Fargo. She’s also recently married and gotten a rescue dog, Murphy.

A highlight of her medical school experience was serving on the Student Wellness Committee.

“I considered myself a mentor to students in the classes below me,” she says. “I tried to help those who asked for help. I learned so much from my classmates and physicians I worked with.”

mayo clinic school of medicine

Leah Grengs Thompson, M.D., on her wedding day

Dr. Thompson helped to start the monthly My Story program in which students and staff members share struggles they’ve faced — losing a loved one at a critical time, struggling with addiction or suicidal thoughts, having a physical disability, failing an exam. According to Amit Sood, M.D. (ADGM 05, CLRSH ’06), chair of the Mayo Mind Body Initiative and a consultant in the Division of General Internal Medicine at Mayo Clinic in Rochester, My Story highlights stories in which people have found a resilient pathway through life’s narrow lanes.

“Students love the My Story program,” says Dr. Sood. “Leah took on this project, which we’re expanding to all three Mayo campuses for all 4,000 learners.”

Dr. Thompson says she was surprised to learn that physicians who seemed to “have it all together” have gone through challenges similar to everyone else’s. “I had no idea of the things others had been through. Just because you’re a department head or well published doesn’t mean you’re immune to feeling completely alone. It helps to know others have had similar obstacles.

“I loved being a student at Mayo and gave everything I could to help others.”

After helping fellow students, Dr. Thompson found herself in need of help at the end of 2016. A brain scan showed some abnormal growth in the area of her childhood tumor. She had gamma knife surgery in January during the time she was interviewing for residency. She says Dr. Wolanskyj-Spinner acted as a surrogate parent to her during that time, helping her figure out her treatment options and how to navigate her residency interviews.

“After helping so many other students, it was crazy that I ended up needing help myself,” she says. “In the past, I’d have been shy about opening up. But I’d learned how to do that and called Dr. Wolanskyj-Spinner right away and asked for her help. She was wonderful.”

A recent scan showed the tumor is stable although lifelong monitoring is required.

Loneliness in people with intellectual and developmental disorders across the lifespan: A systematic review of prevalence and interventions – Alexandra – 2018 – JARID

The aim of the study was to conduct the first systematic review investigating the prevalence of loneliness in people with intellectual developmental disabilities (IDD) and the interventions targeting loneliness.

Source: Loneliness in people with intellectual and developmental disorders across the lifespan: A systematic review of prevalence and interventions – Alexandra – 2018 – Journal of Applied Research in Intellectual Disabilities – Wiley Online Library

Abstract

Background

The aim of the study was to conduct the first systematic review investigating the prevalence of loneliness in people with intellectual developmental disabilities (IDD) and the interventions targeting loneliness.

Method

A search across five databases was conducted (May 2016–June 2016). One reviewer (A. P.) selected the articles for inclusion and assessed their risk of bias using a standardized tool. The second reviewer (A. H.) examined the list of included/excluded articles and the ratings of the studies.

Results

Five prevalence studies met the inclusion criteria and provided an average loneliness prevalence of 44.74%. Only one intervention study was included, and it demonstrated that there was not any significant group difference for loneliness outcomes (= .21). The majority of the studies had a weak quality rating.

Conclusion

The systematic review evidenced that loneliness is a common experience in people with IDD and there is a need to extend current research.

 

Embedding routine health checks for adults with intellectual disabilities in primary care: practice nurse perceptions – Macdonald – 2018 – JIDR

Qualitative study in General Practices located in NHS Greater Glasgow and Clyde, Scotland, UK.MethodEleven practice nurses from 11 intervention practices participated in a semi-structured interview. Analysis was guided by a framework approach.

Source: Embedding routine health checks for adults with intellectual disabilities in primary care: practice nurse perceptions – Macdonald – 2018 – Journal of Intellectual Disability Research – Wiley Online Library

Abstract

Background

Adults with intellectual disabilities (IDs) have consistently poorer health outcomes than the general population. There is evidence that routine health checks in primary care may improve outcomes. We conducted a randomised controlled trial of practice nurse led health checks. Here, we report findings from the nested qualitative study.

Aim

To explore practice nurse perceptions and experience of delivering an anticipatory health check for adults with IDs.

Design and Setting

Qualitative study in General Practices located in NHS Greater Glasgow and Clyde, Scotland, UK.

Method

Eleven practice nurses from 11 intervention practices participated in a semi-structured interview. Analysis was guided by a framework approach.

Results

Practice nurses reported initially feeling ‘swamped’ and ‘baffled’ by the prospect of the intervention, but early misgivings were not realised. Health checks were incorporated into daily routines with relative ease, but this was largely contingent on existing patient engagement. The intervention was thought most successful with patients already well known to the practice. Chronic disease management models are commonly used by practice nurses and participants tailored health checks to existing practice. It emerged that few of the nurses utilised the breadth of the check instead modifying the check to respond to individual patients’ needs. As such, already recognised ‘problems’ or issues dominated the health check process. Engaging with the health checks in this way appeared to increase the acceptability and feasibility of the check for nurses. There was universal support for the health check ethos, although some questioned whether all adults with IDs would access the health checks, and as a consequence, the long-term benefits of checks.

Conclusion

While the trial found the intervention to be dominant over standard health care, the adjustments nurses made may not have maximised potential benefits to patients. Increasing training could further improve the benefits that health checks provide for people with IDs.

Health care expenditures of overweight and obese U.S. adults with intellectual and developmental disabilities

Henan Lia,a, Glenn Fujiura,b, Sandra Magaña,c, Susan Parish,d

a Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University, USA

b Department of Disability and Human Development, The University of Illinois at Chicago, USA

c Steve Hicks School of Social Work, University of Texas at Austin, USA

d Bouvé College of Health Sciences, Northeastern University, USA

A B S T R A C T

Background: U.S. adults with intellectual and developmental disabilities (IDD) have poorer health status and greater risks for being overweight and obese, which are major drivers of health care expenditures in the general population. Health care expenditures and IDD have not been studied using nationally representative samples, and the impact of overweight and obesity have not been examined. Aim: Using nationally representative data, we aimed to compare the health care expenditures of not-overweight, overweight and obese U.S. adults with IDD, and calculate model-adjusted expenditures. Methods and procedures: Pooled data from the 2002–2011 Medical Expenditure Panel Survey linked to National Health Interview Survey (n=1224) were analyzed. Two-part model regressions were conducted, with covariates being year of survey, age, sex, race/ethnicity, household income status, geographical region, urban/rural, marital status, insurance coverage, perceived health status, and perceived mental health status. Outcomes and results: Overall, obese adults with intellectual and developmental disabilities had higher expenditures than their non-obese peers. Being obese was associated with an estimated additional $2516 in mean expenditures and $1200 in median expenditures compared with the reference group, who were neither overweight nor obese. Conclusions and implications: Obesity is an important predictor of higher health care costs among community-living adults with IDD Finding effective strategies and interventions to address obesity in this population has great financial and policy significance.

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