ANALYTICAL REPORT on the results of a survey of persons with disabilities who applied in 2021-2022 for auxiliary rehabilitation aids manufactured at the expense of the budget

We present the results of a survey of persons with disabilities and legal representatives of persons (children) with disabilities who applied in 2021-2022 for assistive devices (technical and other rehabilitation equipment) (hereinafter - ADE), conducted by the National Assembly of People with Disabilities of Ukraine (NAPD).

The purpose of this survey was to find out the situation with the provision of rehabilitation services to persons and children with disabilities at the expense of the state budget and the urgent problems in this area.

The results obtained and analyzed became the basis for generalized conclusions on the declared issues and proposals for possible solutions to the identified problems, as well as material for further activities of the NAIU and its partners, including in their interaction with the authorities.

The analytical report was prepared by Larysa Baida, Pavlo Zhdan, Viktoriia Nazarenko and Alla Sotska.

We are grateful to the participants of the survey for answering the questionnaire, which is a significant basis for developing proposals on possible solutions to the problematic issues identified in the survey.

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SUMMARY REPORT
on the findings from the survey of persons with disabilities, legal representatives of persons (children) with disabilities who applied for assistive rehabilitation devices in 2021 and 2022 produced at the expense of public funds

Introduction

The civil society organization "Ukrainian Public Association 'National Assembly of People with Disabilities'" (NAPD) conducted a survey of adults with disabilities and legal representatives of adults (children) with disabilities who filed applications in 2021 and 2022 to receive assistive rehabilitation devices, i.e. technical and other rehabilitation devices (ARDs).

The purpose of this survey was to understand the situation with the budget-funded provision of ARDs to persons and children with disabilities and to identify related urgent issues.

The survey findings are presented in the analytical report (full text available in Ukrainian) drafted by Larysa Bayda, Pavlo Zhdan, Viktoria Nazarenko and Alla Sotska.

We are grateful to the survey participants for their answers to the questionnaire, which provided a valuable basis for suggestions regarding possible solutions to the identified problems.

The survey was conducted over 18 days, from August 22 to September 8, 2022. A mixed format was used, whereby respondents completed the questionnaire in a Google Form either by themselves or with the help of their legal representatives.

BRIEF OVERVIEW OF ARD PROVISION 

Assistive rehabilitation devices provided free of charge to persons with disabilities, children with disabilities and other specific population groups include:

- prosthetic and orthopedic devices, including orthopedic footwear;
- special devices for self-care and care;
- mobility aids;
- assistive devices for personal mobility, transfer and lifting;
- furniture items and equipment;
- special aids for guidance, communication and information sharing.

Cabinet resolution No. 321 dated April 5, 2012 sets out the Procedure for providing assistive rehabilitation devices (technical and other rehabilitation devices) for adults with disabilities, children with disabilities and other specific population groups and for monetary reimbursement of the cost of such devices when purchased independently and defines the List of Assistive Rehabilitation Devices (technical and other rehabilitation devices) provided to adults with disabilities, children with disabilities and other specific population groups.

The changes to the above Procedurewhich came into force on April 19, 2022, include:

• Provision of ARDs to people who were injured as a result of the war of Russia against Ukraine, i.e. servicemen of the Ukrainian Armed Forces and other military formations, territorial defense volunteers and civilians (regardless of the formal disability assessment)
• Long-term replacement of ARDs for adults with disabilities, children with disabilities, and other persons who lived immediately in the areas of military (combat) operations and during such operations or in areas that were subjected to bombing, air strikes and other armed attacks during the military aggression of the Russian Federation against Ukraine, upon their application and based on a certificate of registration as an internally displaced person.

Regardless of the above changes and other numerous changes to a series of Cabinet resolutions governing ARD provision to persons affected as a result of the military aggression of the Russian Federation against Ukraine, respondents emphasized the need for further improvements to the relevant regulatory documents.

As of the beginning of 2022, free-of-charge ARDs and services to produce them were provided by 106 prosthetic and orthopedic enterprises, both private and publicly-owned, that use certified parts of domestic and foreign manufacture in their production of prosthetic devices. Of these, 54 enterprises produce prosthetic and orthopedic devices.

Specific population groups are entitled to choose an enterprise independently by filing a corresponding request, based on which an order for an ARD is drafted.

In 2022, the Ministry of Social Policy allocated a budget of UAH 1,519,054.4 thousand for the expenditure line "Providing specific Ukrainian population groups with technical and other rehabilitation devices" under the budget program KPKVK 2507030. The amount of relevant funding envisaged in the draft National Budget for 2023 has been doubled.

SURVEY

The survey involved 168 persons (children) with disabilities and their legal representatives. Additionally, 17 persons who do not belong to these population groups were also willing to complete the questionnaire, which points to the urgency of the issues proposed for discussion.

The respondents included 94 persons with disabilities (56%); 22 legal representatives of legally disabled persons lacking legal capacity (13.1%); 52 legal representatives of children with disabilities (30.9%).

In terms of gender, the survey involved 89 women (53%) and 77 men (45.8%). For 2 persons (1.2%) gender information is missing due to their unwillingness to indicate it.

The evidence obtained from the survey refers to 46 persons with category I (sub-category A) disability (27.4%) and the same number of respondents whose disabilities are classified as category I, sub-category B; 16 persons with category II disabilities (9.5%); 9 persons with category III disabilities (5.4%); 37 children with sub-category A disabilities (22%); and 14 children with disabilities (8.3%).

As at the time of the survey, only 16 respondents (9.5%) were aware that starting from July 1, 2022, ARDs may be provided by manufacturers that were included by the Ukrainian State Service for Medicines and Drugs Control in the Register of persons responsible for introducing medical devices, implantable active medical devices and in-vitro diagnostics into circulation. In the meantime, 114 respondents (67.9%) were not aware of it; for 4 respondents (2.4%) it was not relevant; and 34 persons (20.2%) know nothing of this situation.

Almost all respondents - 153 persons or 91% - applied to social protection agencies to receive ARDs. Only 10 people (6%) exercised this right by applying through administrative services centers, and 5 people (3%) - through the online account of an adult/child with disability.

Of the total number of respondents, 87 people (51.8%) reviewed the ARD catalog during the application process (specifically, 20 people reviewed the electronic catalog and 60 people reviewed its paper-based version). In the meantime, 35 people (20.8%) were offered advertising of the manufacturers of relevant devices.

A total of 49 respondents (29.2%) were informed about the compatibility of assistive rehabilitation devices; 6 people (3.6%) were given a compatibility table; 21 people (12.5%) were advised where they can find the relevant information. However, a major part of survey participants - 92 persons or 54.8% - did not receive such information.

A total of 59 respondents (35.1%) were given the list of ARD manufacturers; a specific manufacturer was recommended to 13 respondents (7.7%); 31 persons (18.5%) were advised where they can find the relevant information. Lastly, 65 respondents (38.7%) were not given these details.

The situation of informing respondents about the timeframes for ARD provision can be described as complicated, because 43 survey participants (25.6%) were not given the relevant information; 58 respondents (34.5%) were informed that the date depends on the receipt of funding from the public budget. At the same time, 22 participants (13.1%) stated that they were informed about the date (month), and 45 persons (26.8%) were given indicative timeframes.

In this context, it should be emphasized that even despite military hostilities, according to 22 respondents, in 21 cases manufacturers observed their own specified timeframes; and according to 45 respondents who were given information about indicative timeframes for ARD provision, in 40 cases manufacturers also kept to the relevant timeframes.

The actual timeframes of ARD provision vary from 7 days to 18 months. It should be mentioned that these timeframes are not dependent on the types of assistive rehabilitation devices. Most often, survey participants indicated that the relevant ARDs were provided within a monthly period (26 persons or 15.5%); two months (16 persons or 9.5%); three months (11 persons or 6.5%); five months (6 persons or 3.6%); six months (5 persons or 3%); and within a year-long timeframe (4 persons or 2.4%).

The analysis of responses points to a number of different processes used by manufacturer's representatives to assist respondents in assembling and setting up their ARDs where they were delivered by post. A total of 26 respondents (15.5%) received such support; 6 (3.6%) had to insist that such support be provided; 29 (17.3%) needed it but this need was not met; and 107 persons (63.7%) did not require appropriate assistance.

The responses to the survey questions regarding satisfaction with the quality of the ARDs were quite positive. Specifically, 26 responses (15.5%) reported high levels of satisfaction with their ARDs; 63 (37.5%) responded that they were satisfied; and 56 persons (33.3%) were partially satisfied. A total of 13 persons (7.7%) were not satisfied; and 10 persons (6%) were very dissatisfied.

Based on the survey findings, all respondents who reported problems with ARDs were recommended to contact the Ministry of Social Policy or the Disability Social Protection Fund.

RECOMMENDATIONS

Finally, the analysis of the survey responses demonstrated that during the war, the provision of ARDs to the groups of persons specified in the legislation is carried out in accordance with the existing framework for ARD provision, which is being updated in view of the challenges caused by the military aggression of the Russian Federation.

Meanwhile, the respondents' opinions on the problems related to legal and practical aspects of ARD provision and possible solutions were used to inform the suggestions listed below.

• Legal regulation of the provision of ARDs (technical and other rehabilitation devices)

• A legal mechanism should be developed to ensure that the International Classification of Functioning, Disability and Health is used in the practice of providing ARDs.
• The ARD catalog should be updated taking into account the state register of medical devices.
• The list of ARDs supplied at the expense of public funds should be expanded, first of all for persons with visual and hearing impairments.
• The procedure for providing ARDs to persons with disabilities should be simplified.
• It is important to consider increasing the range of ARDs provided to persons with disabilities through the reimbursement mechanism.
• ARD price caps should be revised.
• The maximum periods established for the use of ARDs for which they are supplied to persons with disabilities.
• It is important to envisage (improve) the possibility of replacing an ARD due to changes in anthropometric details.
• The ARD compatibility tables should be improved. It is necessary to consider providing ARDs to persons with disabilities who qualify to receive them based on their state of health, but do not qualify based on the compatibility tables, provided that they pay 50% of the cost of such devices.
• Measures should be taken to improve the quality of ARDs.
• The results of monitoring the provision of ARDs, their visual inspection and quality assessment should be made publicly available.
• It is important to improve the practice of informing persons with disabilities about ARD provision, specifically to develop informational videos and ensure their dissemination regarding:
• using an online account within the Centralized Disability Database for a person with a disability;
• choosing ARDs and their spare parts by a person with a disability;
• choosing an ARD manufacturer by a person with a disability.

• Legal regulation of the provision of medical and other devices

• It is important to expedite approval by ensuring agreement with associations of persons with disabilities of the following:
• the State Model Rehabilitation Plan for persons with disabilities that affect their daily functioning;
• the Procedure for providing persons with disabilities that affect their daily functioning with medical devices, including assistive rehabilitation devices;
• the Regulation on Individual Rehabilitation Plan, the process of its implementation and funding.
• A legal mechanism should be determined for using the International Classification of Functioning, Disability and Health in the practice of providing medical and other devices;
• It is important to revise the Procedure for providing adults with disabilities, children with disabilities and other specific population groups with medical and other devices (i.e. hearing aids, language processors, eye prostheses, epiprostheses, endoprostheses, urine receptacles, colostomy bags, (absorbing) nappies, diapers, etc.) through health agencies (facilities) approved by Cabinet resolution No. 1301 dated December 3, 2009, the sources and mechanisms of their funding.