Childhood disabilities and the cost of developmental therapies: the service provider perspective

ABSTRACT

Purpose

For children with neurodevelopmental disabilities (CWNDs), early diagnosis that leads to early intervention with regular targeted therapies is critical. In Qatar, private therapy centres that address this demand often have highly exclusive prices restricting families from availing them. This paper examines the challenges faced by families with CWNDs, as well as various financial and systemic obstacles, from the vantage point of these centres, all of which culminate in an extraordinarily high disability price tag for disability families in Qatar.

Methods

This study is based on qualitative, semi-structured, and in-depth interviews with private therapy centres and developmental paediatricians.

Results

Therapy centre representatives expressed common struggles in lengthy and cumbersome administration and licencing procedures, difficulty in hiring and retaining high quality staff, and expenses that need to be paid to the state. From their experience, families largely struggle with delayed diagnoses that significantly slow down intervention plans and therapies as well as staggeringly high financial costs with a dearth of funding options.

Conclusions

We recommend sincere engagement, dialogue, and cooperation between multiple stakeholders; a supportive ecosystem to balance and distribute the demand that includes schools and parents; as well more efficient administrative procedures and recruitment strategies.

KEYWORDS:

• Children with disabilities
• neurodevelopmental disabilities
• disability costs
• health care providers
• disability in Qatar

Disclosure statement

No potential conflict of interest was reported by the authors.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Notes

1. The cost to the family is highly dependent on the type and extent of disability as well as individual family dynamics. Please see (Shaban & Amin, 2023) for more detail on precise figures as well what these costs mean as a percentage of income for different families.

2. Children with neurodevelopmental disabilities may or may not have physical disabilities. Hence, children with only physical disabilities (e.g., blind, deaf, or mobility-aid-using children who have neurotypical capacities) are excluded from this study.

3. These include: the most recent Population Policy of the State of Qatar 2017–2022 issued in 2015 which identifies empowering persons with disabilities as one of its pillars; Qatar’s National Autism Plan (2017–2021); and the Cabinet’s decision in 2019 to establish a National Committee for Women, Children, Elderly, and Persons with Disabilities Affairs. Yet, there remains many roadblocks such as CWDs are not recognized as a separate category, there is little clarity on the actualization of implementation plans, and non-Arab citizens of Qatar are not included in discussions.

4. It is worth studying the availability of interventions for adults with disabilities, as almost all of the therapy centres mentioned here cater to PWDs under 18 years of age. Anecdotally, adults, most especially with neurodevelopmental disabilities, seem to have very limited options available.

5. As illustration, a BA graduate in speech pathology from Qatar University can be licenced upon graduation and having completed an internship within the program; whereas in the UK, licencing is issued upon a Master’s degree in addition to two years of supervision. See as example: Department of Healthcare Professionals (DHP), Ministry of Public Health (MOPH), Circular No. (24/2020), 28 Dec 2020, https://dhp.moph.gov.qa/en/QCHPCirculars/Circular%20(24–2020)%20-%20Eng.pdf; and Ministry of Public Health (MOPH), Psychology Scopes, n.d., https://dhp.moph.gov.qa/en/Documents/Psychology%20Scopes.pdf; and “Speech and Language Therapists”, Health and Care Professions Council (HCPC), https://www.hcpc-uk.org/standards/standards-of-proficiency/speech-and-language-therapists/.

6. At present, there are scarce opportunities for education and training of high-quality practitioners across all fields in Qatar, with almost negligible opportunities available in English. This is further exacerbated by the lack of recognition of online degrees, which is often the only form of educational training open to residents in Qatar who want to contribute to the field.

7. Essentially, HMC is the only official diagnostic centre; however, diagnoses made within Sidra Medicine are accepted in many contexts once it is authenticated by HMC.

Additional information

Funding

The open access funding provided by Qatar National Library.

Notes on contributors

Sabika Shaban

Sabika Shaban is a researcher in the field of disability studies, with a Master’s degree in Islam & Global Affairs from Hamad Bin Khalifa University (HBKU), Qatar, where she is also the Academic Journals and Publications Specialist. She is particularly interested in family experiences of disability, the social infrastructure and policy efficacy to support disability families, and the microeconomics of disability in Qatar. Shaban is also a community builder, mentor, and founder of the Qatar Disability Resource (QADR), a platform that connects stakeholders in Qatar to address information scarcity in the disability community. She uses her research and QADR to raise awareness and advocate for progressive action to advance the rights of people with disabilities in the country.

Hira Amin

Hira Amin is currently an Assistant Professor at the College of Public Policy, Hamad Bin Khalifa University. After completing her PhD at the University of Cambridge, she has been involved in various interdisciplinary projects. Her research interests broadly fall under two categories, first is social, cultural and religious transformations in the modern world and second is global public health, social inclusion and disability.