Capabilities Approach Application in the Development of Regional Rehabilitation Systems in Russia

Abstract

In Russia, the rehabilitation system for people with disabilities (PwD) is developing rapidly, as resources allocated by the federal and regional authorities are increasing. The policy aims to integrate PwD into society through providing equal access to assistive technologies. To create a well-balanced regional rehabilitation system, the development measures include both indicators of actual life improvements (satisfaction of PwD with assistive technologies, comprehensive rehabilitation, facilitating access, etc.) and resources (staffing, costs, legislation, cross-sectoral cooperation, etc.). Panel data from 85 regions were collected (2018–2020). The analysis demonstrates that most systems need to be improved by applying the capabilities approach for cost-effectiveness.

1. Introduction

The understanding of the capabilities of people with disabilities leads to more effective rehabilitation services and assistive technologies (AT).

Sen’s capability approach is a good way to look at social issues from another side: how to think about what people truly need and can do. The principles of functioning and real freedom are wide enough and can be used in a narrower way, alongside free interpretation in the field of rehabilitation of people with disabilities (PwD). The implementation of the capability approach for PwD rehabilitation was described by Anand et al. [1,2,3], Mitra [4], Simon et al. [5], and Bloemen et al. [6]. We follow the evidenced tendencies to show how existing legislation and practices in Russia work for the capability approach in rehabilitation and habilitation.

The principles of the capability approach should be built into the state social policy at the strategy level [1]. It is also correlated with one of the proposals made by Alkire to increase people’s capabilities by meeting their needs [7]. Regarding the capability approach in the rehabilitation of PwD, Mitra indicated the connection between the approach and disability. She emphasised that capabilities and functioning arise when resources are used in the correct way [4].

The capabilities of PwD are the intersection of what they can (or are able to do), what they want to do, and the necessity of doing something. The needs of PwD refer to their wishes (what they want to do) and need to do something. Anand offers to use “a mix of indicators that cover the objective–subjective spectrum” to evaluate the status of wellbeing [1].

Theoretically, following the capabilities approach, satisfaction of PwD’s needs can be assessed to measure the effectiveness of the rehabilitation system. In light of the cost-effectiveness of the rehabilitation system at the regional level, one should match the average effectiveness of interventions and the total costs for the AT provision for PwD.

In Russia, most national legislation and policies describe the needs of PwD rather than their capabilities. The understanding of the capabilities of PwD is strongly connected with the analysis of the needs of every person and can be considered the first step in implementing the capability approach. In terms of the rehabilitation system, the monitoring of PwD’s needs and other resources based on them is an essential element (tool) to improve PwD’s capabilities. The monitoring of PwD’s needs allows the increase in rehabilitation service effectiveness and the reduction in or refocusing of rehabilitation services funding to more demanding areas.

Russia has been on the fast track to building a system of comprehensive rehabilitation and habilitation of adults and children with disabilities (rehabilitation system) since 2012, after the ratification of the Convention on the Rights of Persons with Disabilities (CRPD). Many new legislative documents and practices have been implemented in the rehabilitation system over the past 10 years, such as the Conception of rehabilitation system development up to 2025 (the Conception) [8], monitoring of the rehabilitation system [9], national standards of goal assignment and rehabilitation services quality evaluation [10,11], and amendments to the legislation of the rehabilitation system (more than 40 legislative documents, in total, at the national level). National legislation refers to rehabilitation and habilitation services and assistive devices for PwD (corresponding to the common AT concept used worldwide) in combination with measures aimed at social adaptation and integration.

As of July 2022, there are approximately 10.5 million adults [12] and 0.7 million children under the age of 18 with disabilities in the Russian Federation [13], representing 7.7% of the total population of the country who need AT. Only 13% reside in cities such as Moscow and Saint Petersburg, while 87% are spread throughout other regions with towns and rural areas [12,13]. Equal access to rehabilitation should be provided everywhere. In accordance with the official data from the Federal State Statistics Service, in 2021, approximately 2.7 million individual rehabilitation and habilitation programmes were provided to PwD in the Russian Federation [14], and the total amount of assistive devices delivered was 2.4 million units (excluding absorbent underwear), which demonstrates an increase of 1.4 times in comparison with 2009 [15].

To understand PwD’s capabilities, it is important to collect data on PwD’s needs at different levels: the individual, organisational, regional, and country levels. The national standards enable us to set the goals for the rehabilitation system and assess the quality of the necessary components at all chosen levels [10,11].

The tools based on the International Classification of Functioning, Disability, and Health (ICF), such as the ICF Rehabilitation Cycle [16], help to structure the process of rehabilitation management and the assessment of its particular components [17], including PwD’s needs. The ICF Rehabilitation Cycle, which uses the concept of “functioning” [16] and describes four key steps (the assessment of the initial patient’s health condition, assignment of goals, intervention, and result evaluation) [18], serves as the core of the national standards [10,11].

The data about PwD’s needs are collected at the individual level during the assignment step, and the PwD’s goals and preferences are discussed there.

After providing the rehabilitation interventions, including the delivery of necessary AT, we evaluate their effectiveness and can repeat the ICF Rehabilitation Cycle as many times as needed. The specialists who work with PwD and provide individual rehabilitation and habilitation programmes gather information about the PwD’s needs. However, it is essential to build in monitoring of rehabilitation systems on PwD’s needs and to receive feedback from them to help raise the quality of AT provision.

The next steps are collecting information about the PwD’s needs, the feedback from the PwD, and calculating the funding for the AT provision and the rehabilitation system, to meet the needs and resources. The data are further consolidated into the levels of departments, organisations, regions, and country.

The indicators show the succession between the implementation of the capability approach at the international level, as Anand noted, and the national level “to cover key domains of life” [1] for PwD. The monitoring indicators developed help to prove and broaden the ideas of measurement of PwD’s well-being in different countries, as Diaz Ruiz et al. [19] and Mitra et al. [20] did in their works.

This article describes the approved methodology and the comparative results of monitoring PwD’s needs at the regional and country level in Russia, with the help of four main indicators of interdisciplinary teamwork, PwD’s satisfaction with rehabilitation services, staffing of the organisations, and improvement of the information systems. The aim of the study is the assessment of the rehabilitation system to create a framework for informed decision-making on the resources necessary in order to meet the needs of PwD.

2. Materials and Methods

According to Order 545 of 30 June 2017, “On approval of the methodology for assessing the regional system of rehabilitation and habilitation of persons with disabilities, including children with disabilities”, (Order 545), which was established by the Ministry of Labour and Social Protection of the Russian Federation, the annual monitoring of the rehabilitation systems at the regional and country levels has been achieved in Russia [9].

According to Order 545, the representatives of every Russian region should provide data to calculate four composite indicators based on scoring. Depending on the regional data values and following the approved rules (

Table A1. Scoring of the indicator “The formation of an integrated approach to the organisation of the regional system in the region”.

Terms of the Indicator	Scoring, Points
	0.0	0.1	0.2	0.3	0.4	0.5	0.6	0.7	0.8	0.9	1.0
The share of organisations providing rehabilitation and (or) habilitation services and included in the regional system regarding the formation of an integrated approach to its arrangement in the total number of organisations providing rehabilitation and (or) habilitation services and located in the region	0.0–1.0, value rounded to one decimal place
Number of regional agencies in various fields of activities (healthcare, education, social protection, physical culture and sports, culture, labour and employment, information and communication) involved in the formation of an integrated approach to the arrangement of the regional system	0	-	1	-	2–3	-	-	4–5	-	-	≥6
Availability of the legal and methodological base of the regional system for forming an integrated approach to its arrangement, agreements on interaction between providers of rehabilitation and (or) habilitation measures	no	-	-	-	-	-	-	-	-	-	yes
The share of changes in funding allocated for rehabilitation and habilitation measures to meet the needs of PwD in comparison with the previous period	decline	-	-	-	-	no changes	-	-	-	-	growth
Availability of feasible regional recommendations on options for the provision of rehabilitation and habilitation measures for PwD (plan approved by agencies, certificates, co-financing, and others)	no	-	-	-	-	-	-	-	-	-	yes

,

Table A2. Scoring of the indicator “The satisfaction of PwD (their legal representatives) with rehabilitation or habilitation measures (services)”.

Terms of the Indicator	Scoring, Points
	0.0	0.1	0.2	0.3	0.4	0.5	0.6	0.7	0.8	0.9	1.0
The share of PwD (their legal representatives) who are satisfied with the quality of the provision of rehabilitation and (or) habilitation services in the total number of interviewed PwD (their legal representatives), %	≤9.9	10.0–19.9	20.0–29.9	30.0–39.9	40.0–49.9	50.0–59.9	60.0–69.9	70.0–79.9	80.0–89.9	90.0–99.9	100.0
The share of PwD (their legal representatives) who evaluate positively the system for the provision of rehabilitation and (or) habilitation services in the total number of interviewed PwD (their legal representatives), %	≤9.9	10.0–19.9	20.0–29.9	30.0–39.9	40.0–49.9	50.0–59.9	60.0–69.9	70.0–79.9	80.0–89.9	90.0–99.9	100.0

,

Table A3. Scoring of the indicator “The staffing of organisations providing rehabilitation and/or habilitation services with specialists”.

Terms of the Indicator	Scoring, Points
	0.0	0.1	0.2	0.3	0.4	0.5	0.6	0.7	0.8	0.9	1.0
The share of professionals providing rehabilitation and (or) habilitation measures for PwD, who have updated skills and (or) been trained under programs including application of techniques on rehabilitation and (or) habilitation for PwD in the total number of those professionals, %	≤4.9	5.0–9.9	10.0–19.9	20.0–39.9	-	40.0–59.9	-	60.0–69.9	70.0–89.9	-	90.0–100.0
The share of professionals in educational organizations, who have been trained under programs on rehabilitation and for PwD for the last 5 years and teach professionals providing rehabilitation and (or) habilitation measures in the total numbers of those professionals, %	≤4.9	5.0–9.9	10.0–19.9	20.0–39.9	-	40.0–59.9	-	60.0–69.9	70.0–89.9	-	90.0–100.0

and

Table A4. Scoring of the indicator “The staffing of organisations providing rehabilitation and/or habilitation services with specialists”.

Terms of Indicator	Scoring, Points
	0.0	0.1	0.2	0.3	0.4	0.5	0.6	0.7	0.8	0.9	1.0
Availability of an interagency information system	no	-	-	-	-	-	-	-	-	-	yes
The share of PwD, whose data are stored in the interagency information system, %	≤4.9	5.0–19.9	20.0–29.9	30.0–9.9	40.0–49.9	50.0–59.9	60.0–69.9	70.0–79.9	80.0–89.9	90.0–99.9	100.0
The share of organisations providing rehabilitation and (or) habilitation measures in the regions and connected to the interagency information system in the total number of those organisations, %	≤4.9	5.0–19.9	20.0–29.9	30.0–39.9	40.0–49.9	50.0–59.9	60.0–69.9	70.0–79.9	80.0–89.9	90.0–99.9	100.0
The number of rehabilitation and habilitation measures provided to PwD in the Russian region *	≤3	-	-	4–7	-	8–10	-	-	11–14	-	≥15
The share of PwD who received measures that were written in the individual rehabilitation/habilitation programs and determined by the regional agencies in the total number of PwD who received the individual rehabilitation/habilitation programmes in the bureaus of medical and social expertise in the assessment period, %	≤4.9	5.0–19.9	20.0–29.9	30.0–39.9	40.0–49.9	50.0–59.9	60.0–69.9	70.0–79.9	80.0–89.9	90.0–99.9	100.0

* In 2018, requests of absolute values for scoring showed a very large spread (from 0 to 745,399). Twenty-five percent of the Russian regions (21 of 85) reported more than 15 different rehabilitation and habilitation measures for PwD, whereas the order defined this number as the highest point for scoring. All values that are higher than 15, even approximately 49 thousand times higher, obtain one point. Later in the studies, we changed this term to the one in the last line of Table A4 and used the scoring technique, which is similar to the rest of the terms in the given indicator.

of Appendix A), the indicators are defined as [9]:

(a)

the formation of an integrated approach to the organisation of the system in the region (0–5 points);

(b)

the satisfaction of PwD (their legal representatives) with the rehabilitation or habilitation measures (services) (0–2 points);

(c)

the staffing of organisations providing rehabilitation and/or habilitation services with specialists (0–2 points);

(d)

the formation of the information base of the regional system, taking into account information about the needs of PwD in rehabilitation and/or habilitation services (0–4 points).

The calculation of indicators requires the accumulated data for cross-sectoral rehabilitation and habilitation within the responsibilities of seven regional public authorities: social protection, healthcare, education, employment, physical culture and sports, information and communication, and culture.

To characterise the conditions of the regional rehabilitation system, the final point score has three degrees:

●

less than 7.2 points—the regional government should make a decision on the necessity to form the rehabilitation system by developing and implementing a regional programme;

●

from 7.2 to 13.0 points—the regional government should improve the rehabilitation system;

●

exactly 13.0 points—the regional government considers the rehabilitation system to be formed [9].

Annually, the representatives of state authorities of every Russian region are responsible for a survey in their region to collect data about rehabilitation and are recommended to use a specialised website to upload them (https://medic.center-albreht.ru/ accessed on 12 August 2022; the certificate is mentioned below in the Section 5). The representatives of every region are signed up on the monitoring website, where they enter numbers into four different data forms, and every form is connected with each main indicator. Thus, the panel data were collected from over 85 Russian regions throughout 2018–2020 for advanced analysis. They are shown in the Supplementary Materials (Tables S1–S3).

To make the data comparable and calculate the composite indicators, we applied the normalisation and point-scoring system that was described in Order 545 [9] (Table A1, Table A2, Table A3 and Table A4 of Appendix A). To evaluate the results, the weighted and average values of the indicators were used. The analytical and graphic methods of the comparative analysis demonstrate trends in the indicators and the final scores over the regions and time. In cases of unreliable data and evident mistakes, the representatives of the regional authorities received additional requests to check the information and make corrections to their forms on the website.

3. Results

In 2020, the first indicator, “The formation of an integrated approach to the organisation of the regional system in the region”, amounted to 3.41 points on average, indicating a rather high degree of formation of the rehabilitation system for the period of the assessment and shows the use of an integrated approach in practice. However, this value is lower in comparison to 2019 (3.74 points). The highest value (5 points) according to the data presented is noted in five regions (Figure 1).

The indicator “The satisfaction of PwD (their legal or authorised representatives) with rehabilitation or habilitation measures (services)” is calculated from two criteria [9]:

●

the share of PwD (their legal representatives) who are satisfied with the quality of the provision of rehabilitation and/or habilitation measures in the total number of interviewed PwD (their legal representatives) who received rehabilitation and/or habilitation services;

●

the share of PwD (their legal representatives) who positively evaluate the system for the provision of rehabilitation /or habilitation measures in the total number of interviewed PwD (their legal representatives).

PwD evaluated both the measures provided that include assistive devices and rehabilitation services and the system in general. Every criterion can have a maximum score of 1 point, which means that all the interviewed PwD or their legal representatives are satisfied with the quality of the AT provision or positively evaluate the system for the AT provision. The total maximum score for the indicator “The satisfaction of PwD (their legal or authorised representatives) with rehabilitation or habilitation measures (services)” is 2 points.

According to the data provided by regions, the share of PwD (their legal or authorised representatives) who are satisfied with the quality of the AT provision is, on average, 85.8% (0.8 points) in the country and increased by 11.5% compared to 2019. The distribution of the assessment of satisfaction with the quality of AT provided is shown in Figure 2.

The share of PwD (their legal representatives) who positively evaluate the system for AT provision in the total number of interviewed PwD (their legal representatives) according to the data collected increased by 13% compared to 2019 and averages at 81%. Figure 3 presents the results of the evaluation of the system for AT provision.

Thus, according to the initial data, the satisfaction of PwD (their legal or authorised representatives) with AT has a high average value of 1.57 from 2 possible points and slightly increased in 2020, but it is necessary to pay attention to the quality of the surveys. The maximum value (2 points) is noted in two regions (Figure 4).

Regarding the third indicator, “The staffing of organisations providing rehabilitation and (or) habilitation services with specialists of the appropriate profile based on the needs of PwD in rehabilitation and (or) habilitation services”, it slightly increased in 2020, but still had a low average value of 1.10, while the maximum value (2 points) was observed in three regions. The results of the analysis show the necessity to improve the skills of specialists who carry out rehabilitation and habilitation activities and, first of all, the teachers themselves (Figure 5).

The fourth indicator is one of the most difficult to calculate. After 2018, we slightly changed the mechanism of its measurement. In the majority of the regions, the formation of the information base of the regional system, taking into account information about the needs of PwD in rehabilitation and/or habilitation services, is at an early stage: the average value is 1.65 points, and the maximum value (3.9 points out of 4) is in one region (Figure 6).

In the regions, the informatisation process continued in 2020, approximately 30% of the data on PwD were entered into the interdepartmental information database, and 28% of the organisations in the regions were connected to it.

Based on the general characteristics of the assessment of the regional rehabilitation system presented by the regions, for 2018, 2019, and 2020, a comparative analysis of the dynamics of indicators by section was carried out (Figure 7).

On average, the final indicator shows a high degree of maturity of the rehabilitation system for the period of the assessment (3.42 points out of 5) and shows a more complete use of an integrated approach in practice compared to 2018, but the indicator is slightly lower than in 2019.

The indicator of satisfaction of persons with disabilities (their legal or authorised representatives) with the rehabilitation and/or habilitation activities (services) has a fairly high average value of 1.57 out of 2 and increased significantly in 2020, which indicates the need to pay attention to the quality of the surveys.

The staffing rate of organisations providing rehabilitation and/or habilitation activities is not high (1.10 out of 2), but the growth compared to 2019 and 2018 is noticeable. The results of the analysis show the need to improve the skills of specialists who carry out the rehabilitation and habilitation activities, and, first, the teachers who train the professionals to deliver rehabilitation and habilitation services for PwD.

In 2021, we decided to check the accuracy of the received data and, while collecting numbers from the representatives of state policy in regions, we were also collecting the same information from the public nongovernmental organisations (NGOs) that work with PwD. The results from both sources of information were almost the same, with a mere difference of 10%: the numbers from the regional state policy representatives were 10% more positive than the figures from the NGOs. This is an acceptable difference because both actors have different goals.

In general, according to the data analysis of 2018–2020, there was a significant improvement in the comprehensive rehabilitation and habilitation in the country.

In seven Russian regions, the final point score of the regional rehabilitation system was low (less than 5 points), in contrast to 2019, where there were 11.

A final point score of less than 7.2 points indicates the feasibility of forming the rehabilitation system by developing and implementing a regional programme. The study demonstrates this fact in 34 regions in 2020. The need to improve the regional system, with the result of the assessment of the regional system from 7.2 to 13 points, was noted in 2020 in 49 constituent entities of the Russian Federation. The results of the analysis show that work to improve the regional systems of comprehensive rehabilitation and habilitation of the disabled and children with disabilities should continue.

Summarising the findings, we provide three meaningful examples of the rehabilitation system assessment impact on decision-making in the comprehensive rehabilitation and habilitation of PwD.

The first example belongs to the share of PwD (their legal or authorised representatives) who positively evaluate the system for AT provision. The large amount of unreliable data (1.0 points) in 26 regions in 2018 decreased to 6 (2019) and 5 (2020) points. More accurate surveys were conducted to confirm the information.

The second example demonstrates the growth of teachers who train professionals to deliver rehabilitation and habilitation services for PwD. The number of regions where 1000 to 2000 teachers received new knowledge on rehabilitation and habilitation increased by 69% from 42 (2018) to 61 (2019) to build new skills among professionals. In 2020, this trend was reduced in 65 regions.

The third example illustrates the complexity in the calculation of total costs for AT provision for PwD. They include the prices of assistive devices and costs of the rehabilitation services themselves, as well as the related administrative expenditures in the regions. According to the collected data, the total costs for the AT provision per PwD varied greatly: from 0.003 to 171.7 thousand rubles in 2020.

4. Discussion

Thanks to monitoring, there is a more objective picture of the rehabilitation system at both the regional and country levels. The set of four demonstrated indicators allows the assessment of the status of resource development, the quality of provided rehabilitation services, and the relationship between the resources and capabilities of PwD (their satisfaction with AT and the system in general).

We consider the monitoring of the rehabilitation system within Order 545 [9] as part of the third phase of the Four-Phase Process that is described within the Rehabilitation 2030 initiative [21].

The indicators reflect the comprehensiveness of rehabilitation in the work of various regional authorities towards the improvement of the regional system and its components.

Summing up the findings of the previous studies [1,4,7], we agree that the principles of the capability approach should be built into social policy at the strategy level. In terms of the rehabilitation system, the monitoring of PwD’s needs and other resources based on them is the way to improve PwD’s capabilities. The capabilities approach helps, regardless of legislation and the development of AT, to match and analyse the balance of capabilities (needs) of PwD and resources leading to optimisation.

Applying the capabilities approach to the cost-effectiveness of the rehabilitation system, we suggest using a ratio of satisfaction of PwD for AT and total costs for the AT provision for PwD. In Russia, AT providers often deliver a variety of services; therefore, cost accruals, namely the AT provision to meet PwD’s needs and related administrative expenditures, are difficult to assess due to the gaps in the current legislation. The relevant indicator requires additional elaboration.

To create a well-balanced regional rehabilitation system, we consider the continued application of the development measures, including both indicators of actual life improvements (satisfaction of PwD with AT, comprehensive rehabilitation, facilitating access, etc.) and resources (staffing, costs, legislation, cross-sectoral cooperation, etc.). This analysis demonstrates that most systems need to be improved by applying the capabilities approach to cost-effectiveness.

To extend the monitoring of the rehabilitation system, we also suggest grouping the regions, depending on the sources of funding for their ongoing programmes on development rehabilitation systems. The impact of receiving funds from external sources requires additional investigation and is beyond the scope of this study.

The dissemination of the approach in other countries will undoubtedly require the selection and change of some of the indicators since this depends on the national characteristics of the comprehensive rehabilitation and habilitation, the stage of its development, and national legislation.

5. Patents

Shoshmin, A.V., Vladimirova, O.N., Bezgot’ko, G.A., Ponomarenko, G.N.: Svidetel’stvo o gosudarstvennoy registratsii programmy dlya EVM “Programma dlya avtomatizirovannogo sbora dannykh regional’noy sistemy sub”yekta Rossiyskoy Federatsii po pokazatelyam otsenki regional’noy sistemy i ikh kriteriyam” [Certificate of state registration of the computer programme “Programme for automated data collection of the regional system of the subject of the Russian Federation according to the indicators for assessing the regional system and their criteria”] (in Russian). No. 2021611086, 21 January 2021.