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

1 Грудня 2022 by Olga Zhurbenko

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Introduction

The civil society organization “Ukrainian Public Association ‘National Assembly of People with Disabilities’” (NAPD) carried out 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 budget-funded provision of ARDs to persons and children with disabilities and 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 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 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 Procedure, which 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 (irrespective 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 operation or in the areas that were subjected to bombing, air strikes and other armed attacks during the military aggression of the Russian Federation against Ukraine, on their application and based on the certificate of registration as 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 the result of the military aggression of the Russian Federation against Ukraine, respondents highlighted the need for further improvements to the relevant regulatory documents.

As of the start 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 them, 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 1 519 054.4 thousand UAH for the expenditure line “Providing specific Ukrainian population groups with technical and other rehabilitation devices” under the budget programme KPKVK 2507030 [КПКВК 2507030]. The amount of respective 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 don’t belong to these population groups were also willing to complete the questionnaire, which points to the urgency of the questions proposed for discussion.

The respondents included 94 persons with disabilities (56%); 22 legal representatives of legally persons with disabilities 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 refer 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 [Б]; 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 Ukrainian State Service for Medicines and Drugs Control to 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.

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

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

A total of 49 respondents (29.2%) were informed about the compatibility of assistive rehabilitation devices; 6 persons (3.6%) were given a compatibility table; 21 persons (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 may 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 stressed 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 corresponding assistance.

The responses to the survey questions regarding the 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%) replied 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 informed about 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 legislation is carried out in compliance within 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, 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 catalogue 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 vision 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 to replace 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 in improve the quality of ARDs.
• The results of monitoring of 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 the online account within the Centralized Disability Database for a person with disability;
• choosing ARDs and their spare parts by a person with disability;
• choosing an ARD manufacturer by a person with 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 prosthetses, 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.