Summary of Responses to RFI: People with Disabilities and Opioid Use Disorder 1 of 12

Summary of Responsesfrom a Request 

for Information: People with Disabilities 

and Opioid Use Disorder

About NIDILRR

The National Institute on Disability, Independent Living, and Rehabilitation Research’s (NIDILRR) mission 

is to generate new knowledge and to promote its effective use to improve the abilities of individuals 

with disabilities to perform activities of their choice in the community, and to expand society’s capacity 

to provide full opportunities and accommodations for its citizens with disabilities.

As the federal government’s primary disability research agency, NIDILRR achieves this mission by:

• providing for research, demonstration, training, technical assistance and related activities to 

maximize the full inclusion and integration into society, employment, independent living, family 

support, and economic and social self-sufficiency of individuals with disabilities of all ages;

• promoting the transfer of, use and adoption of rehabilitation technology for individuals with 

disabilities in a timely manner; and

• ensuring the widespread distribution, in usable formats, of practical scientific and technological 

information.

NIDILRR grantees address a wide range of disabilities across populations of all ages in their research and 

development projects and knowledge translation activities.

Disclaimer

All statements in this publication, including its findings and conclusions, are solely those of the author 

and do not necessarily represent the views of the NIDILRR, ACL, or DHHS. Questions or comments may 

be sent using the below information.

National Institute on Disability, Independent Living, and Rehabilitation Research

Administration for Community Living

Department of Health and Human Services

330 C St., SW, Washington, DC 20201 

Phone: (202) 795-7882

sarah.ruiz@acl.hhs.gov
Summary of Responses to RFI: People with Disabilities and Opioid Use Disorder 2 of 12

Contents

Executive Summary.................................................................................3

Introduction............................................................................................4

RFI Respondents .....................................................................................5

Key Themes from Respondents ..............................................................6

Next Steps...............................................................................................8

References submitted to RFI...................................................................9
Summary of Responses to RFI: People with Disabilities and Opioid Use Disorder 3 of 12

Executive Summary

The Request for Information (RFI)—People with Disabilities and Opioid Use Disorder, yielded 

comments from 50 respondents, including consumers, community and national organizations, 

research teams, and federal partners. Key findings from the RFI have been helpful to NIDILRR as 

it considers the development of new funding opportunities related to the opioid crisis. These 

responses have provided NIDILRR with information about what is known and what are the most 

pressing research questions for the disability and rehabilitation research fields. A common 

thread among respondents was that there are many important unanswered research questions 

at the nexus of chronic pain, opioid misuse, and people with disabilities.

This summary report provides a brief overview of the findings from the RFI responses and is 

organized as follows: 

• RFI Respondents: includes overview of all RFI respondents 

• Key Themes from Respondents: describes themes, including new knowledge about the 

prevalence of opioid use disorder among people with disabilities and the success of 

treatment strategies

• Next Steps: describes potential future funding efforts 

Key takeaways from the RFI responses are as follows: 

• New evidence suggests that people with disabilities are more likely than the general 

population to misuse opioids and develop an opioid use disorder but may be less likely 

to receive treatment than those without disabilities.

• Approximately half of the RFI respondents commented on barriers to treatment for 

opioid use disorder among people with disabilities, including physical accessibility of 

treatment centers, limited insurance coverage, and polices that withheld opioid 

prescriptions without first offering pain management alternatives.

• People with disabilities who experience a serious traumatic injury (e.g., spinal cord 

injury or traumatic brain injury) may be at greater risk of opioid misuse and 

unintentional death due to opioid poisoning.

Limitations of this assessment are that it draws mostly from the sample of voluntary 

respondents. For more details, please see the original RFI.
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Introduction

Defined by the DSM-5, an opioid use disorder is a problematic pattern of opioid use leading to 

clinically significant impairment or distress, as manifested by clinically meaningful risk factors 

occurring within a 12-month period.1 Opioid use disorder has been identified as an epidemic 

problem in the general population of the United States, requiring extensive interventions in 

policy and practice (Laxmaiah, 2012; Jette, 2018). However, little is known about the prevalence 

of this disorder among people with disabilities, and whether they experience disparities in 

accessing necessary treatment.

Following the release of an ACL issue brief on The Opioid Public Health Emergency and Older 

Adults, NIDILRR became interested in the paucity of research focusing on people with long-term 

disabilities and their likelihood of developing an opioid use disorder. Although an extensive 

literature documents that chronic pain is more prevalent and under-treated among people with 

disabilities compared to people without disabilities (Ehde et al., 2003, Kennedy et al., 2014; 

Nampiaparamphil, 2008), the question remains as to whether people with disabilities seek and 

gain access to treatment when needed. It follows that they may also be underserved for 

treatment of pain, a factor that can lead to abuse of prescribed opioids or use of illegal opioids

(Baker, 2017).

In January 2018, NIDILRR issued a Request for Information (RFI) on People with Disabilities and 

Opioid Use Disorders in an effort to address gaps in knowledge, mentioned above. This RFI 

invited stakeholders from the broad disability and rehabilitation communities to provide input 

about the prevalence of opioid use disorder among people with disabilities and about whether 

existing treatment strategies were accessible and adequate. 

This document summarizes the input received from respondents to NIDILRR’s RFI. Input 

provided will help inform NIDILRR’s future relevant funding opportunities.

 

1 For full definition, see DSM 5 Definition of Opioid Use Disorder
Summary of Responses to RFI: People with Disabilities and Opioid Use Disorder 5 of 12

RFI Respondents

NIDILRR would like to thank the 50 respondents who provided information relevant to the RFI. Unless 

respondents gave permission to make their role in this report public, information about respondents has 

been de-identified throughout this summary. We publicly acknowledge the assistance of the following 

responding National and Community Organizations:

• Access Living Chicago

• Alliance for Treatment of Intractable Pain

• American Association of Nurse Practitioners

• American Physical Therapy Association

• American Psychological Association Division 22 Rehabilitation Psychology

• Colorado Cross Disability Coalition

• Michigan Opioid Prescribing Engagement Network

• National Council on Independent Living

The respondents were diverse geographically and by disability type. They represented 24 states and the 

District of Columbia, and, as noted above, included several national organizations. While many 

respondents could be included in more than one group (e.g., a clinician who was also a consumer with a 

disability), 12% were clinicians, 14% were community organizations, 28% were consumers, 14% were 

federal partners, 14% were national organizations, and 18% were research teams. 
Summary of Responses to RFI: People with Disabilities and Opioid Use Disorder 6 of 12

Most respondents focused on people with disabilities in general, but 25% focused exclusively on a 

subgroup such as people with physical, behavioral/psychiatric, intellectual/developmental, sensory, or 

cognitive disabilities, as well as people with disabilities from racial/ethnic minority groups, and Medicaid 

beneficiaries. 

Key Themes from Respondents

New evidence suggests that people with disabilities are more likely than the general population to 

misuse opioids and develop an opioid use disorder but may be less likely to receive treatment than

those without disabilities. Respondents submitted three studies that draw on two nationally 

representative data sources, the National Survey of Drug Use and Health and administrative data on 

beneficiaries who qualify for Medicaid on the basis of their disability. 

Two studies using the National Survey of Drug Use and Health found that people with disabilities were 

more likely to misuse prescription pain medicine or use heroin than those without disabilities (Kennedy 

et al., 2018, Lauer et al., 2018). People with disabilities were at relatively high risk of opioid misuse or 

heroin use, due in part to the high prevalence of persistent pain and need for prescription drug relief. 

A research team at IBM Watson Health, using Truven Health MarketScan® Medicaid Databases, found 

that not only do Medicaid beneficiaries with disabilities have a significantly higher likelihood of opioid 

use disorder than those without disabilities (6.6% versus 4.2% ), but also that beneficiaries with 

disabilities with a diagnosed opioid use disorder were significantly less likely to have a prescription for 

an approved treatment medication for opioid misuse (e.g., Medication Assisted Treatment; SAMHSA, 

2018) than people without disabilities (11% versus 32%). That is, as a group, people with disabilities 

have a greater likelihood of having an opioid use disorder, and yet they are much less likely to receive 

treatment for it. This suggests that people with disabilities may face greater barriers to opioid use 

disorder treatment than those without disabilities. All three of the above studies point to the 

importance of research to assess barriers to treatment for an opioid use disorder among people with 

disabilities.

Approximately half of the RFI respondents commented on barriers to treatment for opioid use 

disorder treatment among people with disabilities, including physical accessibility of treatment 

centers, limited insurance coverage, and polices that withheld opioid prescription without first 

offering pain management alternatives. Physical accessibility of substance abuse treatment centers was 

the concern reported most by consumers; specifically, for respondents in rural communities with only 

one treatment site, these sites were often not accessible to wheelchair users. National organizations 

cited policy changes (e.g., caps on opioid prescriptions) as the greatest barrier to treatment. These 

policy changes would limit access to opioids and would cut off consumers “cold turkey” with no 

alternative pain management strategies offered. One especially concerning study on policy changes by 

the Drug Enforcement Administration found that 37.7% of consumers with fibromyalgia affected by 

changes to opioid access considered suicide (Kornblau, 2015; Kornblau et al., 2017; Chambers et al, 

2015; Gleason et al., 2014). Respondents from community organizations reported insurance coverage, 
Summary of Responses to RFI: People with Disabilities and Opioid Use Disorder 7 of 12

including limited choices in local behavioral health offerings, as the most important barrier to opioid 

treatment.

Several respondents reported that people with disabilities who developed opioid use disorder are not 

able to access treatment for misuse of the drug. Respondents from the Cross Colorado Disability 

Coalition (CCDC) reported that Medicaid does not cover inpatient treatment and there are few 

detoxification facilities. Access to mental health services is limited and generally, people with opioid use 

disorders and co-occurring disabilities are turned away—even when Medicaid had prepaid through a 

managed care plan. Inpatient psychiatric facilities would not accept people with physical disabilities who 

have care needs such as personal assistance with bathing, dressing, and transferring. Moreover, the 

behavioral health system denied behavioral health services to people with a brain injury or intellectual 

disability, stating that the real problem is not opioid use disorder, but the other disability. According to 

the CCDC, even the crisis centers in Colorado offering short-term respite for people in crisis will not 

accommodate people with disabilities who had opioid use disorder.

Several national organizations asserted that any approach to the opioid crisis must balance the goal of 

decreasing opioid use disorder with the need for people with chronic pain to access adequate pain 

management. Consumer organizations reported that people with disabilities who use opioids 

responsibly as a way to control chronic and intractable pain are being treated as drug addicts. Many 

people are no longer able to hold down full or part-time employment, engage in volunteer work, or 

carry out other family responsibilities because pain is not appropriately managed. Additionally, when 

pain is not managed for people with disabilities, other problems emerge such as unexplained excessive 

blood pressure fluctuations, heart palpitations or racing, and falls due to extreme spasticity. These, in 

turn, increase emergency room visits and decrease function and quality of life.

People with disabilities who have experienced a serious traumatic injury may be at greater risk of 

opioid misuse and unintentional death due to opioid poisoning. Traumatic injuries, such as traumatic 

brain injury and spinal cord injury, often result in long-term disability, and have multiple secondary 

health conditions frequently treated with opioids. Three research teams submitted comments on these 

populations. 

Spinal cord injury: New data indicate that opioid misuse is more prevalent among people with spinal 

cord injury than the general population (Hand, et al., 2018). Current research has identified a link 

between the frequency of prescription medication used to treat pain, sleep, and depression with 

adverse health outcomes (Clark et al., 2017; Krause et al., 2015). Recent research found that the use of 

pain medications is associated with greater risk of mortality (Krause et al., 2017), and that increases in 

frequency of pain medication use was associated with a greater risk of all-cause mortality (Cao et al., 

2017). A new study (Krause et al., 2018) of people with spinal cord injury draws a definitive link between 

frequency of prescription medication use, sensation seeking, and binge drinking with unintentional 

death due to drug poisoning and overdose. A significant portion of these preventable deaths are directly 

related to opioid use.
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Traumatic brain injury: Two research teams reported that people with traumatic brain injury are at a 

significantly greater risk for opioid misuse and overdose. Traumatic brain injury often results in 

headaches and orthopedic injuries for which they are prescribed opioids. In addition, traumatic brain 

injury also frequently results in impairment of cognitive functions such as memory, which may result in 

people forgetting that they have taken their pain medication, and therefore taking it again. It also

frequently results in impaired judgement and impulsivity, which may also lead to overuse of pain 

medication. The aggregate consequences of the cognitive and behavioral impairments following 

moderate to severe traumatic brain injury typically results in difficulties with community re-entry, family 

adjustment and stability, and return-to-work resulting in mood disorders, for which they may selfmedicate with opioids. Further, between 70-80% of patients with traumatic brain injuries are 

discharged with a prescription for an opioid (Hammond et al., 2015). Analyses of 14,398 subjects in the 

NIDILRR Traumatic Brain Injury Model Systems database2 revealed that people with traumatic brain 

injury were 11 times more likely to die of overdose than the non-brain injured population (Hammond et 

al., 2018). At the present time, there are no opioid prescribing guidelines for people with traumatic brain 

injury.

Next Steps

NIDILRR recognizes the urgency of further research based on RFI responses and is engaging in internal 

efforts to explore the potential for future funding opportunities to generate new knowledge and 

promote its effective use to address the opioid crisis and its impact on people with disabilities. Several 

possible future funding areas include:

• Systematic reviews of existing literature on opioid use disorder and people with disabilities.

• Prevalence estimates of opioid misuse and treatment patterns for people with disabilities 

using secondary data sources. 

• Individual and environmental factors associated with increased risk for opioid use disorder 

for people with disabilities.

• Individual and environmental factors associated with improved access to treatment for 

opioid use disorder for people with disabilities. 

• Interventions that contribute to improved outcomes for people with disabilities diagnosed 

with an opioid use disorder. Interventions include any strategy, practice, program, policy, or 

tool that, when implemented as intended, contributes to improvements in outcomes for 

people with disabilities. 

• Effects of government policies and programs on health care access and on treatment 

outcomes for people with disabilities who have an opioid use disorder. 

 

2 For details, see Traumatic Brain Injury Model Systems Website
Summary of Responses to RFI: People with Disabilities and Opioid Use Disorder 9 of 12

We invite the disability and rehabilitation communities to continue to provide critical information to 

shape NIDILRR’s funding priorities. Please send additional responses to Sarah Ruiz at 

sarah.ruiz@acl.hhs.gov .

References Submitted to RFI

1. Baker, D. W. (2017). History of The Joint Commission’s pain standards: lessons for today’s 

prescription opioid epidemic. Jama, 317(11), 1117-1118.

2. Benoit, E., Young, R., Magura, S., & Staines, G. L. (2004). The impact of welfare reform on 

methadone treatment: Policy lessons from service providers in New York City. Substance use & 

misuse, 39(13-14), 2355-2390.

3. Bogdanowicz, K. M., Stewart, R., Chang, C. K., Downs, J., Khondoker, M., Shetty, H., ... & Hayes, R. D. 

(2016). Identifying mortality risks in patients with opioid use disorder using brief screening 

assessment: Secondary mental health clinical records analysis. Drug & Alcohol Dependence, 164, 82-

88.

4. Cao, Y., & Krause, J. (2017). Medication Usage Changes and All-Cause Mortality after Spinal Cord 

Injury. Archives of Physical Medicine and Rehabilitation, 98(10), e12.

5. Cao, Y., Clark, J. M., & Krause, J. S. (2018). Changes in psychotropic prescription medication use and 

their relationship with mortality among people with traumatic spinal cord injury. Spinal cord, 1.

6. Chambers JF, Gleason, RM., Kirsh, KL., Twillman, B., Webster, L., Berner, J., Passik, SD. (2015). The 

impact of hydrocodone rescheduling in people with pain: The first 100 days. American Academy of 

Pain Medicine 2015. March 19-22, 2015; National Harbor, Maryland

7. Clark, J. M., Cao, Y., & Krause, J. S. (2017). Risk of pain medication misuse after spinal cord injury: 

The role of substance use, personality, and depression. The Journal of Pain, 18(2), 166-177.

8. Connery, H. S. (2015). Medication-assisted treatment of opioid use disorder: review of the evidence 

and future directions. Harvard review of psychiatry, 23(2), 63-75.

9. Darnall, B. D., Ziadni, M. S., Stieg, R. L., Mackey, I. G., Kao, M. C., & Flood, P. (2018). Patient-Centered 

Prescription Opioid Tapering in Community Outpatients With Chronic Pain. JAMA internal medicine.

10. Darnell, B. (2018) Comparative Effectiveness of Pain Cognitive Behavioral Therapy and Chronic Pain 

Self-Management within the Context of Opioid Reduction Accessed at See description of a project 

on pain management by Beth Darnell

11. Ehde, D. M., Jensen, M. P., Engel, J. M., Turner, J. A., Hoffman, A. J., & Cardenas, D. D. (2003). 

Chronic pain secondary to disability: a review. Clinical Journal of Pain, 19(1), 3-17.

12. Glazier, R. E., & Kling, R. N. (2013). Recent trends in substance abuse among persons with disabilities 

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13. Gleason, R.M., Kirsh, K.L., Passik, S.D., and Chambers, J.F., (2014). Current access to opioids—survey 

of chronic pain patients. Practical Pain Management. Retrieved from a website containing research 

findings on practical pain management

14. Hackman, D. T., Greene, M. S., Fernandes, T. J., Brown, A. M., Wright, E. R., & Chambers, R. A. 

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15. Hammond, F. M., Barrett, R. S., Shea, T., et. al. (2015). Psychotropic medication use during inpatient 

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