An Individual Rehabilitation and/or Habilitation Program for Children with Disabilities (IPRH)

Introduction: The individual program of rehabilitation and (or) habilitation of children with disabilities (IPRH) is mandatory for execution by the relevant state authorities, local self-government bodies, as well as organizations regardless of organizational-legal forms and forms of ownership.

Objective: To conduct a pilot analysis of the implementation of the IPRH contingent of patients of children with disabilities in an urban children’s clinic.

Patients and methods: There were 366 reports on the implementation of measures provided for by an IPRH for a disabled person (disabled child) of 222 disabled. The organization of the study was in the nature of a continuous sample. The criterion for the inclusion of patients in it was the passage of an IPRH in a disabled child within a specified time frame. The following techniques were used: grouping, absolute and relative values, average values, detailing, and generalization. The threshold error probability for statistically significant differences was set at a level of 0.05.

Results: The structure of the results of the control of the performance of IPRH in 222 disabled children according to the classes of diseases that caused the onset of disability (ICD) was as follows 1) G00-G99 - 35.47 ± 3.13%; 2) Q00-Q99 - 23.50 ± 2.77%; 3) 11.11 ± 2.05%; 4) C00-D48 - 10.25 ± 1.98%; 5) H60-H95 - 7.26 ± 1.67%; 6) M00-M99 - 2.99 ± 1.11%; 7-8) H00-H59 and P00-P96 - 2.14 ± 0.95%; 9-10) K00-K93 and S00-T98 - 1.29 ± 0.74% each; 11-12) I00-I99 and N00-N99 - 0.85 ± 0.60% each; 13-14) J00-J99 and L00-L99 - 0.43 ± 0.42% each.

Conclusion: 1. In the structure of IPRH in 222 disabled children, according to the classes of diseases that caused disability (ICD), the following prevailed: 1) VI Diseases of the nervous system G00-G99 – 35.47%; 2) XVII Congenital anomalies, chromosomal disorders Q00-Q99 - 23.50%; 3) IV Diseases of the endocrine system, nutritional disorders, and metabolic disorders E00-E90 – 11.11%; 4) II Neoplasms C00-D48 - 10.25%; 5) VIII Diseases of the ear and mastoid process H60-H95 - 7.26%; 6) XIII Diseases of the musculoskeletal system and connective tissue M00-M99 - 2.99%; 7-8) VIII Diseases of the ear and mastoid process H60-H95 and VII Diseases of the eye and its adnexa H00-H59 - 2.14% each.

2. The effectiveness of medical rehabilitation of disabled children was as follows: 1) Improvement - 23.26%; 2) Stabilization - 74.88%; 3) Deterioration - 1.86%. Dynamic observation was carried out on 94.26% of disabled children, drug therapy - 77.32%, non-drug therapy - 66.93%, and other types of medical rehabilitation were received by 14.48% of patients. Reconstructive operations were performed on 11.26% of disabled children.

3. Prosthetics and orthotics were performed on 38.74% of disabled children. 32.43% of disabled children in need received sanatorium treatment, and 30.18% are currently in line to receive a voucher. For various reasons, 24.32% refused this type of rehabilitation; 3.60% of patients had contraindications at the time the voucher was provided.

4. The obtained research results become the initial everyday statistical tool for objectifying the process of rehabilitation of patients and determining the strength and means of a medical institution to monitor and successfully implement an individual rehabilitation/habilitation program for a disabled person.

Individual rehabilitation Program for a disabled person (IPRH) is a set of rehabilitation measures that are optimal for a disabled person, including certain types, forms, volumes, timing, and procedures for the implementation of medical, professional, and other rehabilitation measures aimed at restoration, compensation for impaired or lost body functions, restoration, compensation for a disabled person’s ability to perform certain types of activities.

IPRH is mandatory for execution by relevant state authorities, local governments, as well as organizations, regardless of organizational, legal forms and forms of ownership [1-6].

The definition of the concepts “rehabilitation” and “habilitation” was given by the legislator in the Federal Law of November 24, 1995 No. 181-FZ “On the social protection of disabled people in the Russian Federation (RF)”. Rehabilitation of disabled people is a system and process of full or partial restoration of the abilities of disabled people for every day, social, professional, and other activities. Habilitation of disabled people is a system and process of developing the abilities that disabled people lack for every day, social, professional, and other activities. Rehabilitation and habilitation are aimed at eliminating or possibly more fully compensating for limitations in life activity, for the purpose of their social [7-13].

The implementation of state policy in the field of rehabilitation of disabled people is currently carried out through the Federal (state program of the Russian Federation “Accessible Environment”, regional, and municipal target programs for social protection and comprehensive rehabilitation of disabled people, as well as IPRH (disabled child) [14-19].

Purpose of the study

To conduct a pilot analysis of the implementation of IPRH for a contingent of patients with disabled children undergoing rehabilitation on the basis of the state budgetary healthcare institution of the Komi Republic “Syktyvkar Children’s Clinic No. 3” (“SChCl No3”).

An assessment of the implementation of IPRH of patients in “SChCl No3” was carried out on the basis of an analysis of 366 reports on the implementation of activities provided for by the IPRH of a disabled person (disabled child) of 222 disabled children. The organization of the study was in the nature of stratified selection with the formation of a continuous sample. The criterion for including patients in it was the completion of IPRH in a disabled child within the established time frame.

The study was conducted at SChCl No3, which is a united specialized clinic in Syktyvkar with a capacity of 1126 visits per shift and serves 42079 children. The institution includes 47 pediatric sections, 2 medical outpatient clinics, an Intermunicipal Diagnostic Center, a Health Center, a rehabilitation center, and medical units in educational organizations: preschools - 69, schools - 39. 81.2% of the child population of Syktyvkar and 22, 4% - RK. Therefore, the results obtained can be extrapolated as possible not only to the entire child population of the regional center but also to the entire subarctic region of the Russian Federation with low population density. “SChCl No3” provides assistance: preventive, therapeutic and advisory, organizational and methodological, social and legal. It includes a city rehabilitation center, an inter-municipal diagnostic center, and a health center for children and adolescents “SChCl No3”, holder of the high WHO/UNICEF title “Child Friendly Clinic” since 2002. In 2004-2006. The clinic worked in the International Project “Mother and Child”, and since 2018 it has been participating in the project “Lean Clinic”.

When working on the material, methodological approaches were used: systemic, complex, integration, functional, dynamic, process, normative, quantitative, administrative, and situational. The following methods were used: historical, analytical, and comparison. The following techniques were used: grouping, absolute and relative values, average values, detailing, and generalization. The arithmetic mean and standard deviation with a normal type of distribution of variables were used as the main characteristics of descriptive statistics. Qualitative characteristics were presented in the form of relative frequencies with the definition of a confidence interval. The significance of differences in quantitative characteristics between groups with a normal distribution of quantitative variables was calculated using Student’s t-tests for independent samples. The threshold error probability for statistically significant differences was set at a level of 0.05.

Rehabilitation activities for patients “SChCl No3” are developed based on the principle of the need of disabled children for a particular activity. Electronic interaction for the exchange of information on the implementation of measures provided for by the individual program of rehabilitation and (or) habilitation (IPRH) of a disabled child includes 1) Medical rehabilitation, including dynamic observation; drug therapy; non-drug therapy; individual conclusions of the medical commission; other events; 2) reconstructive surgery; 3) prosthetics, orthotics; 4) spa treatment [10,20].

Control over the implementation of IPRH includes a list of activities, their performer, the date of execution, and the conclusion “Completed” or “Not completed”. The reasons for non-fulfillment of the measures provided for by the IPRH may be: 1) Failure of a disabled child or a legal (authorized) person to apply for the provision of the provided measures; 2) Refusal of one or another type, form and volume of the provided activities; 3) Refusal of the planned activities in general; 4) Specific reasons for non-fulfillment of activities. Most often - waiting for a discounted voucher for sanatorium treatment [21-24].

The structure of the results of monitoring the implementation of IPRH in 222 disabled children according to the classes of diseases that caused the disability (ICD X) is presented in Table 1.

The effectiveness of medical rehabilitation of disabled children was as follows: 1) Improvement - 23.26%; 2) Stabilization - 74.88%; 3) Deterioration - 1.86%.

Article 9 of the Federal Law of November 24, 1995 No. 181-FZ “On the social protection of disabled people in the Russian Federation” (hereinafter referred to as the Law) includes such types of rehabilitation as medical rehabilitation, reconstructive surgery, prosthetics, and orthotics, sanatorium-resort treatment. The implementation of this direction of rehabilitation of disabled people involves the use of technical means of medical rehabilitation by disabled people.

The state guarantees disabled people to carry out rehabilitation activities at the expense of the federal budget, receive technical means of rehabilitation and services provided by the “Federal List of Rehabilitation Activities, Technical Means of Rehabilitation and Services Provided to Disabled Persons,” approved by Decree of the Government of the Russian Federation dated December 30, 2005 No. 2347-r [3,6].

The concept of “medical rehabilitation” is defined by Article 40 of the Federal Law of November 21, 2011 No. 323-FZ “On the Fundamentals of Protecting the Health of Citizens in the Russian Federation”, as a set of medical and psychological measures aimed at the full or partial restoration of impaired and (or) compensation for lost functions of the affected organ or system of the body, maintaining the functions of the body in the process of completing an acutely developed pathological process or exacerbation of a chronic pathological process in the body, as well as prevention, early diagnosis and correction of possible dysfunctions of damaged organs or systems of the body, prevention and reduction of the degree of possible disability, improving the quality of life, maintaining the patient’s working capacity and his social integration into society [2,4].

Medical rehabilitation is carried out in medical organizations and includes the complex use of natural healing factors, drugs, non-drug therapy, and other methods.

Medical rehabilitation measures are aimed at restoring and compensating for impaired or lost body functions that underlie the disability of a disabled person.

Drug therapy is the use of medications to prevent the progression of the disease that causes disability and its complications. The provision of medicines is carried out free of charge in accordance with the Federal Law of July 17, 1999 No. 178-FZ “On State Social Assistance”, which defines the list of citizens, including disabled people, who have the right to receive state social assistance in the form of a set of social services, incl. drug provision, and the territorial program of state guarantees for the provision of free medical care to citizens of the Russian Federation, approved annually, containing a list of medicines that are dispensed according to doctor’s prescriptions free of charge or with a 50% discount for the treatment of a number of diseases.

Types of medical rehabilitation of the studied patient population were distributed as follows: Dynamic observation was carried out on 94.26 ± 1.22% of disabled children, drug therapy - 77.32 ± 2.19%, non-drug therapy - 66.93 ± 2.46% and others 14.48 ± 1.84% of patients received types of medical rehabilitation (all p < 0.001).

Reconstructive surgery is a service for the medical rehabilitation of disabled people, which consists of performing surgical operations to restore the structure (anatomical integrity) and functions (physiological independence) of the individual’s organs and systems. Recommendations for reconstructive surgery are given by specialists from medical organizations if there are medical indications and there are no medical contraindications to this type of medical care. Reconstructive operations were performed on 11.26 ± 2.12% (p < 0.001) of disabled children “SChCl No3”.

Rehabilitation therapy is carried out in stages, including alternating outpatient and inpatient forms in healthcare institutions or in institutions of other departmental affiliations that provide medical services to the population. Activities include the main medical, surgical, physical, psychological, and other medical methods for a disabled person [7,8,25].

Prosthetics – restoration of functions or elimination of cosmetic defects of damaged organs or body parts using prosthetics; replacement of a partially or completely lost organ with an artificial equivalent (prosthesis) with maximum preservation of individual and functional abilities. Orthosis is compensation for partially or completely lost functions of the musculoskeletal system with the help of additional external devices (orthoses) that ensure the performance of these functions. Prosthetics and orthotics were performed on 38.74 ± 3.27% (p < 0.001) of disabled children.

Technical means of medical rehabilitation are defined by Article 11.1 of the Federal Law of November 24, 1995 No. 181-FZ “On Social Protection of Disabled Persons in the Russian Federation” - these are devices containing technical solutions, including special ones, used to compensate or eliminate persistent disabilities and (or) compensation for impaired or lost body functions.

When medical indications and contraindications are established, a decision is made to provide disabled people with technical means of rehabilitation. Medical indications and contraindications are established by federal state institutions of medical and social expertise, in accordance with the “List of indications and contraindications for providing disabled people with TSR”, approved by Order of the Ministry of Labor of the Russian Federation dated December 9, 2014 No. 998n.

Technical means of medical rehabilitation are intended to achieve technical compensation for lost body functions; the Federal List includes the following:

- Prostheses, including endoprostheses, orthoses;

- Ocular cavity prostheses;

- Anti-decubitus mattresses and pillows;

- Medical thermometers and tonometers with speech output;

- Hearing aids, including custom-made inserts;

- Voice-forming apparatuses;

- Special means for dysfunction of excretion (urine and colostomy bags, catheters, urine collection bags, stoma care products);

- Absorbent underwear, diapers.

The need for technical means of medical rehabilitation must be confirmed by the conclusion of a medical specialist from a healthcare institution:

- If there is a need for prosthetics, orthoses - the conclusion of the specialists of the prosthetic and orthopedic enterprise (the act of the medical-technical commission) on the type of necessary prosthetics, orthoses, and its terms of use;

- If there is a need for eye cavity prostheses - by the conclusion of the medical commission of a medical organization;

- If there is a need for hearing aids - a conclusion from an audiologist at a medical organization on the type and power of the required hearing aid and the degree of hearing compensation when using it and an audiogram;

- If there is a need for special means in case of dysfunction of excretion (urine and colostomy bags, catheters, urine collection bags, stoma care products) - the conclusion of an oncologist, surgeon, or proctologist, if necessary, indicate the type and size of a urine or colostomy bag;

- If there is a need for absorbent underwear, diapers - a urologist’s opinion on the nature and degree of urinary incontinence and the volume of daily diuresis;

- If there is a need for anti-bedsore products (mattress and pillow), a voice-forming apparatus, a medical thermometer, and a tonometer with a speech output - the conclusion of the medical commission of a medical organization, reflected in the referral for a medical and social examination (form No. 088/u-06) [1,2,6].

The provision of technical means of medical rehabilitation to disabled people is carried out at the place of residence of the disabled person by a body authorized by the Government of the Russian Federation (Regional Branch of the Social Insurance Fund of the Russian Federation) in accordance with Decree of the Government of the Russian Federation dated 04/07/2008 No. 240 “On the procedure for providing disabled people with technical means of rehabilitation and certain categories of citizens including veterans prosthetics (except dentures), prosthetic and orthopedic products” if there is a corresponding recommendation from the IPRH.

Sanatorium-resort treatment can be one of the stages of rehabilitation treatment (Article 40 of the Federal Law of November 21, 2011 No. 323-FZ “On the fundamentals of protecting the health of citizens in the Russian Federation”) or have a general strengthening value.

In the IPRH, recommendations for sanatorium-resort treatment are included if rehabilitation treatment in a sanatorium-resort complex is aimed at restoring and (or) compensating for impaired or lost body functions, eliminating or reducing the degree of disability.

Providing disabled people with vouchers for sanatorium-resort treatment is carried out by an agency authorized by the Government of the Russian Federation (Regional Branch of the Social Insurance Fund of the Russian Federation) in accordance with Federal Law No. 178-FZ of July 17, 1999 “On State Social Assistance” [16-18].

In accordance with the order of the Ministry of Health and Social Development of the Russian Federation dated November 22, 2004 No. 256 “On the procedure for medical selection and referral of patients for sanatorium and resort treatment,” citizens entitled to receive state social assistance in the form of a set of social services, a certificate for obtaining a voucher (form No. 070/ u-04) is issued on the basis of the conclusion of the medical commission of a medical organization providing medical and preventive care. 32.43 ± 3.14% of disabled people in need received sanatorium-resort treatment, and 30.18 ± 3.08% are currently in line to receive a voucher. For various reasons, 24.32 ± 2.88% refused this type of rehabilitation; 3.60 ± 1.15% of patients (all p < 0.001) had contraindications at the time the voucher was provided. The vouchers were redistributed to other children in need; the disabled themselves were not removed from the queue [27-30].

1. In the structure of IPRH in 222 disabled children, according to the classes of diseases that caused disability (ICD), the following prevailed: 1) VI Diseases of the nervous system G00-G99 – 35.47%; 2) XVII Congenital anomalies, chromosomal disorders Q00-Q99 - 23.50%; 3) IV Diseases of the endocrine system, nutritional disorders, and metabolic disorders E00-E90 – 11.11%; 4) II Neoplasms C00-D48 - 10.25%; 5) VIII Diseases of the ear and mastoid process H60-H95 - 7.26%; 6) XIII Diseases of the musculoskeletal system and connective tissue M00-M99 - 2.99%; 7-8) VIII Diseases of the ear and mastoid process H60-H95 and VII Diseases of the eye and its adnexa H00-H59 - 2.14% each.

2. The effectiveness of medical rehabilitation of disabled children was as follows: 1) Improvement - 23.26%; 2) Stabilization - 74.88%; 3) Deterioration - 1.86%. Dynamic observation was carried out on 94.26% of disabled children, drug therapy - 77.32%, non-drug therapy - 66.93%, and other types of medical rehabilitation were received by 14.48% of patients. Reconstructive operations were performed on 11.26% of disabled children.

3. Prosthetics and orthotics were performed on 38.74% of disabled children. 32.43% of disabled children in need received sanatorium treatment, and 30.18% are currently in line to receive a voucher. For various reasons, 24.32% refused this type of rehabilitation; 3.60% of patients had contraindications at the time the voucher was provided.

4. The obtained research results become the initial everyday statistical tool for objectifying the process of rehabilitation of patients and determining the strength and means of a medical institution to monitor and successfully implement an individual rehabilitation/habilitation program for a disabled person.

The authors express their sincere love to their parents. The authors are grateful to Pikkel MV, Trubina AM, Anisimova LK, Levitina TP, Kudryavtsev VA, Kucherenko VZ, Dobrodeeva LK, Udalova LS, Klepikova RA, Bannikova RV, Kalenyuk AF, Sevastyanov AN, Knyazeva NP, Slutsky SI. Karakozova NG, Katorkin VI, Popova IA, Dashunina TS, Arzubova IN, Zaboeva MS, as well as all anonymous reviewers for their support, valuable advice and useful comments.

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