Healthcare Getting It Right : Disability

Efforts to properly and adequately secure health for those with disabilities is a global work in progress.

The 2022 Global Report on Health Equity for Persons with Disabilities [1] is a great step forward. Next steps could include:

Planning

Plans for follow-up reports, updates and standardization work (metrics, etc) could be detailed. Short- and long-term points, meetings, and responsibilities of individual groups could be detailed.

Strong analysis

Application of the definition of disabilities as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” could be analyzed sharper. This definition could be examined In the context of the cited estimate that 80% of persons with disabilities live in low- and middle-income countries where health services are limited [2]. Stronger analysis would improve global picture accuracy and focus.
Tiers related to outcomes, health quality of life and policy implementation by country could be developed in similar fashion to income tiers. This could help with organization and a united path forward.

Representation

Survey and response could include patient disability and patient advocacy organizations. For example, global spinal cord injury, global vision and global autism organizations could ask patients and caregivers needs questions directly. Asking communities what they do not have to help keep them healthy, as well as what is preventing them from obtaining what they need (ie money, transportation, stigma, independent decision-making, unavailable resources in the country) is a solid approach.

Hand-off improvements

World health makes many recommendations for many health issues, and the recommendations are broadly directed to government, leadership, policymakers and rights groups. A specific handoff with set expectations could be established for disabilities and health. When WHO makes specific recommendations regarding epilepsy [3], decisions, implementation and funding would be automatically picked up by the team. When disabilities related to specific disorders receive significant attention, and solutions are presented, there should be a coordinated hand-off.

Implementation

Literature reviews with international focus should be examined, compiled and used as a foundation for future portfolio planning.e
Recommendations should be decided on and concerns should be taken seriously. For example, healthcare worker training, communication and time allocation barriers [4] related to primary care and intellectual disability should prompt discussions of medicine redesign.

The United States continues with integrated approaches to disability and healthcare. Social services, disability experts and public insurance are major coordinators in this approach. Despite efforts, healthcare for those with disabilities is insufficient and health outcomes are inferior. A few focal points could include:

Transparent actions

Public health efforts to link disability alongside known health outcomes needs to improve. For example, the CDC’s Disability and Health offers many topics yet navigates us to the condition [5]. It would be helpful to know the data around disparities, the interventions, and the ongoing solutions. It would be helpful to hear if insurance coverage for adaptable gym equipment or insurance coverage for electric toothbrushes and prescription toothpaste is in the works. It would also be helpful to know if fresh fruit and vegetable adaptation tools, like kitchen appliances to help with soft diets, will be funded.
Public health efforts to address specific unhealthy behaviors within the disability community should be recognized, appreciated and funded. Work with smoking reduction [6] is a great example.
Public health efforts to align with world health on disability and health [7] should be encouraged and continued. US public health work with the disability community [8] could be a model, or could adapt, alongside international health teams.

Strong analysis

Financial literature around healthcare and disability is great [9]. Future analyses could consider inclusion of durable medical equipment specifics and/or access to holistic care (ie mental health, physical therapy, social services, meditation, complementary and alternative medicine, chiropractic medicine).

Representation

The disability community should be part of public health design routinely, automatically and representatively.
The disability community should be asked some basics, and those basics should be responded to. What can be done for better home care and home delivery? What can be done for independence with healthcare?
The disability community should be routinely asked what should be considered as essential equipment for healthcare, including adapted bathing and personal hygiene tools.
Response should be measured and, if applicable, reimbursed accordingly. It is patronizing to have conversations without response, and this community’s input should valued. Failure to do so could be matched with reimbursement consequence.

Implementation

Health equity recommendations from medical experts [10] should be advanced with assigned responsibility from public and private healthcare partners.
Solutions should be shaped by anticipatory design. For example, training and education of healthcare workers continues to be a named solution for disability health equity. Yet there is no simultaneous work to link resources in a provider-friendly manner, improve electronic medical records, or create efficiency with medical billing. Solutions should be implemented wisely.

Expert guidance.

The National Council On Disability should be listened to [11]. Private and public healthcare should be addressing policy requests without delay, then advocating and working toward policy implementation. These requests include:

1. Designating people with disabilities as a Special Medically Underserved Population (SMUP) under the Public Health Services Act;

2. Designating people with disabilities as a Health Disparity Population under the Minority Health and Health Disparities Research and Education Act;

3. Requiring comprehensive disability clinical-care curricula in all US medical, nursing and other healthcare professional schools and requiring disability competency education and training of medical, nursing and other healthcare professionals;

4. Requiring the use of accessible medical and diagnostic equipment

5. Improving data collection concerning healthcare for people with disabilities across the lifespan.

US military, VA and veteran organizations can and should champion disability health equity. Disability and health equity is an enormous topic with many layers. Military and VA health partnerships can help lead the way to improvement. Some actions could include:

Implementation science

Advancing health equity between military and civilian disabled populations as well as for everyone with a disability are both achievable. Research reviews, reimbursement for evidence-based practice, consensus on recommendations, and implementation science can pave the way

Research and data improvement

Stand-alone research, like an article on SCI and obesity [12], should have an automatic pathway through to decision-making, additional data funding or implementation of interventions.
Literature reviews [13] should identify gaps for future research portfolio work.
Satisfaction research should include best methodology to account for disability and health [14].
Sources and surveys on military family satisfaction and needs [15-17] could be streamlined, removing redundancy or masking of any issue.
Clarification between military family special needs and disability should be given consideration.

Inclusion

Disability health efforts should account for disability comprehensively: military families with special needs [18], veterans and caregivers, active-duty members and spouses, and all other individuals involved with the military.
Conversations on data transparency and inclusion of the military should occur. Continued civilian population focus [19] is inefficient and suboptimal. Identification of the civilian veteran as the sole military indicator is also suboptimal, such as the American Community Survey used in disability reference [20]. Both 1) federal reimbursement of work that excludes military stats and 2) access and ease of de-identified active-duty disability data should be a civilian-military conversation.
The National Council on Disability should always have a seat at the table and should always make room for VA and military disability health leadership at their table.
Policy changes in civilian healthcare should occur equally in the military.

References

1. https://www.who.int/activities/global-report-on-health-equity-for-persons-with-disabilities

2. https://www.who.int/news/item/02-12-2022-health-inequities-lead-to-early-death-in-many-persons-with-disabilities

3. https://www.who.int/news/item/12-12-2022-new-who-brief-sets-out-actions-needed-to-improve-lives-of-people-with-epilepsy

4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465578/

5. https://www.cdc.gov/ncbddd/disabilityandhealth/relatedconditions.html

6. https://www.cdc.gov/ncbddd/disabilityandhealth/smoking-in-adults.html

7. https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html

8. https://www.cdc.gov/grand-rounds/pp/2019/20191015-intellectual-disabilities-H.pdf

9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5798675/

10. https://www.healthaffairs.org/content/forefront/advancing-health-equity-people-intellectual-and-developmental-disabilities

11. https://ncd.gov/sites/default/files/NCD_Health_Equity_Framework.pdf