Background

Access to information and communication is one of the major problems facing people with hearing loss in everyday life.

From a medical perspective, hard of hearing people (further: "HoH") are those who have a mild (up to 40dB), moderate (up to 55dB) or severe hearing loss (up to 90dB). The social definition is much more expansive. HoH people are, first of all, the people who identify as such. They can be medically deaf (in need of amplification of 90dB and more), but with a hearing aid or cochlear implant, assistive listening devices, early rehabilitation, integrated upbringing and education they have the functionality to perceive and understand speech and environmental sounds to a varying extent. And thus, they identify themselves as personally and socially HoH. Usually HoH people rely on residual hearing for understanding; they lip read, gesture, observe body language of a speaker and speak. Importantly, in various situations they also rely on the use of such technical assistive listening devices as hearing aids, induction loop systems, FM systems, infra-red systems, phone volume amplifiers, as well as subtitling on TV, Computer Assisted Realtime Translation or CART (also called "palantype" in Europe) and other devices, accordingly.

A common misconception is often observed in relation to HoH people: "Having a hearing aid is enough". However, in complex auditory environments, it is not. An impaired ear cannot filter noise, even with a hearing aid (Nafzger, 2008). Therefore, additional devices as well as training and a change in society's attitudes are crucial.

This paper is an attempt to shed light on the specific constraints faced by HoH people in accessing assistive listening devices that are vital to their communication capability, functionality and participation in the society. It will focus on the situation of HoH people in Germany and the Russian Federation — the countries that are part of the ongoing, first international research project called, "Hard of Hearing Young People in Europe: developing strategies on access to equal participation, social inclusion and protection of human rights". The project, the only of its kind, is being conducted by IFHOHYP, the International Federation of Hard of Hearing Young People, and was supported by the Council of Europe.

The research is devoted in part to access to communication, amongst the other key themes (access to education, access to employment, access to participation and awareness of one's own rights).

Research methodology

The research was conducted through analysis of the results of a) quantitative questionnaires on access to information, education, employment, communication, governmental support and knowledge of national protective legal framework — the questionnaires were disseminated amongst HoH individuals in several European countries; b) qualitative semi-structured interviews with the experts in the field (policy experts, leaders of the non-profit organizations of/for people with hearing loss, government representatives).

In Germany, the research centered around two different federal Lands (Länder) and cities (Hamburg and Berlin accordingly).

In Russia, the research centered around Northwestern district (St.Petersburg) and Central federal district (Moscow).

The questionnaire respondents had to meet the following criteria:

• To identify themselves as HoH
• To be aged 18 to 35 (period of transition from school to employment)

Part of the respondents are activists of youth or adult chapters of Schwerhoerigenbund in Germany or disability NGOs in Russia who are more knowledgeable of the political, social and economic realities of the countries in relation to HoH people. And part of respondents were bilingual, i.e. HoH who use both oral speech and sign language depending on the context.

International legislation framework

Access to assistive technologies is a human and fundamental right, as indicated in Article 4 of the UN CRPD, and highlighted in Articles 20, 26, 29 and 32. It is also consumers' and users' right that users and consumers with disabilities should be able to benefit from the same opportunities as their non-disabled peers. On the EU level, the access to assistive technologies is regulated by the Medical Services Directive, 93/42/EEC, and the Council Directive establishing a general framework for equal treatment in employment and occupation, 2000/78/EC—it was part of a proposal for a Council Directive on implementing the principle of equal treatment between persons irrespective of religion or belief, disability, age or sexual orientation {SEC(2008) 2180} {SEC(2008) 2181} which refers to accessibility and reasonable accommodation, and others.

Constraints in access to assistive technologies for HoH people

As indicated by interviews and questionnaires, the main constraints in accessing needed technologies are as follows: lack of information / stereotypes, costs of devices (real or assumed), unavailability / lack of assessment information, limited training on device use and rehabilitation services, which can create disincentives and barriers to work, as well as device complexity and/or long period of waiting.

Access to assistive technologies for HoH people is provided on an application basis in most countries in Europe. The "prescribed" list of equipment limits the individual's choice and causes financial pressure on the individual in question. Assessments are based mostly on the medical model of disability and are not based on the HoH person's specific needs (e.g. a need for more powerful dB coverage / frequency output of a hearing aid, remote control, or an "audio shoe" for a hearing aid). In the words of a German interviewee, "you can hear with an inexpensive hearing aid, but how will you understand speech with it?"

Procedures are often described as "bureaucratic". Budget limitations and upper price limits severely undermine the choices and possibilities of independent living for HoH people. For example, Germany has a fixed percentage, where usually only about 420 or 360 Euros from the cost of a hearing aid is covered by the insurance, while a quality hearing aid necessary for a severely hard-of-hearing or late-deafened person costs 1000-2500 Euros. A chief complaint for German respondents was the affordability of quality hearing aids. The subsidy the government allows for hearing aids is perceived to be ludicrously small. Respondents indicated that "obviously the government and health insurance have absolutely no idea what needs HoH people have". The Russian respondents claimed that the planning of the government is "short-term," and the respondents were angered by the fact that there are no communication accommodations in education and employment for HoH people. Both German and Russian respondents indicated the lack of understanding of the specific needs of HoH people by the service providers. The low level of public awareness produces insufficient implementation of existing laws. An example of this is the viewpoint that installing assistive devices and recruiting interpreters is not of much importance since "everyone can hear," and people with hearing disabilities exist in their own small group and rarely participate in the mainstream. Lack of informed choices is evident in both countries.

Legislation framework in Germany

There are several laws that were put into force in the last decade to improve participation of people with disabilities in the work place and in society:

• The Act to Combat Unemployment among Severely Disabled Persons (2000)
• Social Code Book IX — Rehabilitation and Participation (2001)
• The Disability Equality Act (2002)
• The Act to Improve Training and Employment for the Severely Disabled (2004)
• The General Equality Act (2006)

The direction of German disability policy has changed from welfare and care to social participation and inclusion since Social Code Book IX was put into force in 2001. Disabled people now have the right to claim four types of benefits in order to achieve participation in society:

• Medical rehabilitation
• Work rehabilitation and work assistance schemes
• Benefits for securing one's livelihood
• Individual integration support (Eingliederungshilfe)

If necessary, disabled people can claim integration support (Eingliederungshilfe), which is offered as part of the social assistance system (Sozialhilfe) and belongs to the scheme of so called assistance in special life situations (Hilfe in besonderen Lebenslagen). The goal of this benefit, which obeys the principle of subsidization, is to provide adequate assistance and financial support in those cases in which assistive technologies are needed. (ANED Report on Independent Living, 2009)

Under the General Equality Act of 2006, disabled people are not only protected against discrimination under employment law, but also in civil law. With the Federal Non-Discrimination Authority (Antidiskriminierungsstelle des Bundes), a new institution was established, which is intended to stimulate public discourse, to inform about non-discrimination legislation, to monitor the practice and to do research (http://www.antidiskriminierungsstelle.de). (ANED Report on Social Inclusion, 2009)

Responses from Germany

To date, 132 quantitative online questionnaires were filled out by German respondents, and 30 interviews were collected. 36% of respondents relied on one or two cochlear implants, and 74% used hearing aids. 59% communicated only orally, and 84% had an official disability status. 29% used assistive technologies during their education at school or at the university, where 85% relied only on hearing aids and cochlear implants, and 49% relied on induction loops or FM-systems. 32% indicated that the induction loop or FM-system was not available to them. Only 12% evaluated lack of access to assistive technologies as one of the key problems for HoH in Germany. Access to cultural life, namely to concerts and theatres, was evaluated as "extremely low" by 36% and 38% accordingly, while access to the movies was evaluated as "average" by 31% of respondents.

In this paper, we will deliberately not discuss in detail the access to cochlear implantation, as this specific issue requires more research and analysis than this paper can afford. We will focus instead on the access to hearing aids as the primary tools of inclusion and participation for HoH people, and assistive listening devices such as FM-systems.

In mainstream schools where HoH students study, assistants—so-called "ambulant teachers" (Ambulantlehrer)—explain the specificity of hearing loss to school staff and teachers, discuss the best approaches on how to make the student's learning process smoother, and explain the use of assistive technologies. An "ambulant teacher" also supports a hard of hearing student through consultations.

In this way, "ambulant teachers" serve as mediators in the communication process. On a negative side, sometimes HoH pupils in mainstream schools may be not aware of the resources they are entitled to, including their right to get an ambulance teacher. The current trend of an increasingly inclusive education in Germany implies that more and more students with hearing loss will be accommodated in mainstream schools, provided with micro port facilities and assisted by "ambulant teachers".

At times in higher education, personal assistants or counselors are not provided. HoH young people are forced to struggle for their own right to information and education, especially as the means of technical rehabilitation are not as accessible after the age of 18:

"Under the age of 18 you can apply for a FM system [radio-transmitter system where the microphone is with a lecturer while receiver remains with a student — K.C.], induction loop system and sign language interpreter from your health insurance. After the age of 18 — not anymore. If you study at a big university, you can ask the council responsible for people with disabilities and they can help you to get such assistive listening devices, such as the Phonak Smart Link FM-system, or to rent it. But you can get such equipment mostly only in big universities—if you address them and ask them." (Ulrike, 29)

Due to lack of state provisions, funding and awareness, HoH students have to define and re-define their own strategies for access to communication and being included in the education process:"Still no induction loop systems in the study halls, not enough stenographers, and we have to fight hard for an interpreter as state does not have enough money to pay for their work". (Nicole, 22)

According to respondents, there is a lack of induction loop systems in lecture halls, and there are no universities with a good supply of technical aids or interpreters. Only at very large universities, such as the Free University in Berlin, disability councils can be helpful.

HoH students take an active part in self-advocacy and raising awareness on their needs; they write articles to the newspapers about the needs for sign language interpreters and high pay demands of interpreters (46 Euros per hour provided by the state, are considered insufficient by interpreters). The realities of everyday life and study of a HoH person at a mainstream university show that equipment alone is not enough for integration in the study process. Attitudes and knowledge about the needs of HoH are the key. Invisible disability is not perceived as a serious barrier to education, or is not taken as a disability at all:

"I asked my math professor to use the FM system and he put it in his trousers. Of course I could not hear anything. I tried to explain him that I am profoundly hard of hearing and need the system to help me to follow the classes, but it did not work. He forgot or did not want to use it. Several weeks later he saw that I was talking to my friend in sign language and said 'Ah! She is deaf! I did not know that.'" (Corinna, 25)

"I had a problem with my University professor who did not want to wear a FM system for me. What could I do? We do not have disability counselors at German universities like in the US, and the council responsible for students with disabilities is nearly toothless… so I had to find my own way to cope with the situation. I was lucky it was not a required subject in my program." (Anonymous, young German man, 32).

In the public understanding a person is either deaf or hearing, there is no middle ground. Stereotypes of deafness or hearing loss are connected with sign language and underdeveloped, unclear and monotonous speech, or lack of speech. Despite the process of re-defining relations between disabled people and the state, a lot of time will pass before HoH would be able to explain and prove what technical means are necessary for their inclusion in education and at work. In this sense, HoH people are at a big disadvantage in contrast to a deaf person whose belonging to the vulnerable social group is explicitly demonstrated by cultural markers, such as a sign language.

"Not every student gets sufficient help, especially those who are in small universities / colleges. Mostly they have to fight hard to get a writing aid or an interpreter as state does not have enough money to pay for their work". (Joerg, 27)

In the workplace, the state body responsible for integration (Integrationsamt) goes through a long bureaucratic procedure of decision-making on what kind of support is needed by a person with a hearing loss. Since the General Equality Act adoption in 2006, deaf or hard of hearing people are entitled to have a personal assistant at work solely for work purposes. This assistant's task is to help answer and make phone calls, take notes, and so on:

"My friend at work has this personal assistant who replies phone calls. It looks very funny for people who come into the office: Mark looks at the assistant who is speaking on the phone, and reads his lips. And assistant sits across Mark with a phone receiver in his hand, speaks with a very clear articulation so Mark can understand what the conversation is about. Sometimes assistant repeats, just with lip movement or sounds, and then the person on the other end of the phone has to wait…" (Helga, 29).

Personal assistants are costly to the budget and the integration agencies seek different ways to reduce the use of welfare or to assist only with the technical equipment and assistive listening devices. In some instances, Hamburg Integrationsamt decided to cut the use of personal assistants since this service requires a hefty amount of funding, not only for the monthly payment, which can be as much as 1100 Euros, but also for costly insurance.

Hearing aids as a prerequisite for participation of hard of hearing people

Hearing aids represent one of the biggest (in terms of expenditure), the oldest and the most widely used forms of assistive technology. In Germany alone, the market for hearing aids was over €200 million in 2006 (J. Stack, L. Zarate, C. Pastor, 2009).

Rehabilitation centres and centres of information such as Hörbiz, are open for free consultations on the choice and fitting of a hearing aid, on the use of assistive listening technologies such as FM systems and induction loop systems, and they consult on how to apply for a hearing aid. The technical means of rehabilitation are provided through health insurance, most important of these provisions are hearing aids worn behind the ear or inside the ear. The statutory pension insurance system provides benefits for medical rehabilitation and participation in the labour market. Reimbursement policies in Germany provide the coverage of hearing aids through public and private insurance companies (J. Stack, L. Zarate, C. Pastor, 2009).

"The hearing aid is the basic tool for hard-of-hearing people, it is the precondition for our participation in society" (Jens, 27)

Despite this seemingly obvious need, the most painful issues for German respondents were the budget limitations and fixed upper price limits for hearing aids that were introduced by insurance companies and rehabilitation agencies, as well as the lack of transparency on the hearing aids' actual prices. Hearing aids are paid partially by the health insurance and partially by a HoH person. To purchase a high quality digital hearing aid (cost of which can be over 1000 Euros), a person has to pay extra from his/her own pocket in order to exercise choice: "Our insurance covers only 421 Euros of a hearing aid purchase! If one receives a second hearing aid, a 20% discount must be given for it, but in reality this does not always work." (Christoph, 37)

"In 2005, I had to cash out 3,300 Euro for my two hearing aids. These are the only good hearing aids — digital, which distinguish sounds very well — that help me to function and communicate in a street, office or a restaurant. Fortunately I was able to fund my hearing aids from the legacy of my parents. But what is the next new provision? This is a new form of discrimination and exclusion in Germany". (Joachim, 53)

"Unfortunately, the issue of reimbursement of the hearing aids in many cases is not clarified or has to be dealt with very large bureaucracy. In many cases there is a confusion of responsibility, which cost carrier (employment agency, Integration Office, Federal Labour Office, etc.) is responsible: who will pay?" (Ralph, 32)

Access to information in culture, transport and telecommunication sector

Hard of hearing German respondents indicated that they do not have the same opportunities for participation in culture as hearing people. For instance, there is no obligation in Germany for cinema operators to show movies with subtitles/ captions for hard of hearing people. The reason why HoH and deaf people find little support for their communication needs in the cultural sector is the lack of legal provisions. In the telecommunications sector there is no phone relay service. However, Germany's TESS operator has developed a relay service (allowing deaf and HoH to make phone calls via an assistive device or a computer), but it is not popular because it requires the use of a stationery computer. Lack of support for people with hearing loss can also be seen in train stations, where train delays are announced verbally as a rule.

The questionnaire and interview responses show that the disability policy benefit system is well developed at the level of the law, but that the benefits do not reach HoH people in an adequate way. The difficulties, apart from bureaucracy, lack of information and tensions between relevant actors taking part in decision-making, can also be ascribed to the legislation reforms and the relative novelty of some laws.

The majority of respondents indicated that awareness-raising has to be the main strategy that the HoH organizations take towards convincing companies, employers, HoH people themselves, and labour offices of the controversies and problems of access to technical aids for HoH people. It was stressed that for this to happen, the association landscape has to be improved because it is still divided into "deaf" and "hard of hearing," which does not provide a good lobby in Berlin or Hamburg. Often, the political strategies of the participating organizations diverge (Deaf, hard of hearing, CI users, etc.). Instead, a stronger networking among interest groups of service users would be welcomed.

The Context in the Russian Federation and Legislation Framework in Russia

During the last decade, the number of the disabled in Russia has doubled, and in 2010 amounted to13 million of people (about 7% of the population). According to the estimates of the Agency of Social Information, there are actually no less than 15 million disabled people, since the official statistics on disability are based on the amount of registered people with disability status, i.e. those who underwent a difficult bureaucratic procedure in order to achieve the status. The official statistics on disabled people do not accurately represent the amount of all people with impairments. Such a rapid increase in the number of disabled people has led to serious difficulties with financial provision of the social policy towards disabled people. The experts estimate that there are about 13 million people with hearing loss in Russia and more than 1 million of them are children.

The specificity of the disability discourse in Russia is relying on the former Soviet medical model called "defectology," i.e. viewing the "defect" and trying to cure it or ameliorate it through some type of medical intervention, such as drugs, surgery, or prostheses.

The Law on State Pensions in the Russian Federation defines three groups of disability depending on the degree of health damage. Individuals who have completely lost regular work capacity are assigned to Group I if they require permanent care, and to Group II if the disability is severe but not permanent. Those with only partial disability, whether or not permanent, are assigned to Group III (Sinyavskaya, 2004). Hard of hearing individuals are assigned to Group III as a rule. A special medical commission defines disability status. Previously, it was reconsidered every two years for the first group, and annually for the second and third groups, except for those individuals who have reached official retirement age or have incurable diseases (Merkuryeva, 2007; Seitenova and Becker, 2008).

The main mechanism of the rehabilitation of a disabled person (with officially recognized disability status) is the Individual Programme of Rehabilitation (IPR). The IPR is called to consider all individual needs and targets the state support. Since 2005, the IPR was introduced across Russia by the Order of the Ministry of Health and Social Development #287 on November, 29 2004. IPR should include all activities, technical and other means of rehabilitation, as well as rehabilitation services necessary to a disabled person for the full-fledged independent living.

In accordance with the law called, "On Social protection of people with disabilities in the Russian Federation" (Art.11), IPR is "mandatory for implementation by the relevant state authorities, municipal authorities and organizations". However, for a disabled person herself, the IPR has a permissive character accordingly with the art.11 of the Law. There is a tendency to fill in an IPR card for every person, however, for not all (suitable) services and technical means of rehabilitation are included by experts in the card — commonly only those which are readily available from the state.

"The Federal list of the rehabilitation measures, technical means and rehabilitation services provided to disabled" (Order of the State of the Russian Federation, 2005 N 2347- р) includes the following technical aids for hard of hearing and deaf people that they can receive upon the medical experts' recommendation in their IPR card:

• Alarms sound light and vibration.
• Hearing aids, including custom-made earmoulds.
• TV set with teletext for the reception of programs with closed captioning.
• Telephone devices with a text output. (this includes TTY / text telephones, but people can obtain mobile phones with the SMS function when the "telephone device with a text output" title of the product is clearly stated in the receipt)

In 2008 it became possible for HoH people to apply for full reimbursement of the hearing aids within the federal list and in accordance with the IPR prescription. The Order No. 240 called, "On the provision of disabled persons with technical means of rehabilitation," stated that "a disabled person, in accordance with their individual rehabilitation programme (IPR), has the right to choose the equipment and services, and in case of purchase of these at their own expense, to obtain compensation in full". It was a tremendous breakthrough, achieved partly by the lobbying and advocacy of the disability NGOs and the All-Russian Society of the Deaf. In 2008, according to the data of the Ministry of Health and Social Development, the following aids were distributed to people with hearing loss: 55,9 thousand hearing aids (83% of applications filed); 395 TV with a text output (78% of applications); 10,5 thousand TV sets with closed captioning (72% of applications); 5,8 thousand light sensors (67% of applications); 5,2 thousand vibrating sensors (61% of applications); 1444 individuals used sign language interpretation services (85.5% of the applications received).

The federal programme titled, "Social Support of Persons with Disabilities 2006-2010" intended, in part, to increase the availability of assistive technologies for people with hearing disabilities from 28% in 2005 to 82% in 2010. Federal programs provided implementation in 2007-2008 in the mass production of two new models of the audio technology: digital hearing aids (behind-the-ear type); Audiology centres and 18 complexes for cochlear implantation for people with hearing disabilities (cost over 18 million rubles); room TV devices with closed captioning for the introduction of a system to broadcast on public television channels (purchased and delivered equipment of 12.2 million rubles); developing a national standard in "electronic rehabilitation hearing aids. Methods for measuring the acoustic characteristics in an individual's ear" (From the Round table "Activities of the Ministry of Health and Social Development of the Russian Federation on access to information of citizens with hearing disabilities").

However, to the astonishment of people with disabilities, the process of TMR provision recoiled back—in accordance with the Order of the Ministry of Health and Social Development from 31.01.2011 No. 57n, compensation of the TMR will be paid by the territorial authority of the FSS or executive authority of the Russian Federation. "The amount of compensation is equal to the cost of technical means of rehabilitation, but no more than the cost of a similar technical means of rehabilitation provided in accordance with an individual program of rehabilitation." In other words, the reimbursement will be carried out only within the fixed upper price limits, which diminishes choices of users with disabilities.

On February 4, 2010, the Ministry of Health and Social Development issued the recommendatory letter #30-6/10/2-2561 that suggested decreasing the reimbursement of mobile phones and TV sets for people with hearing loss from full compensation to the minimum (997 rubles for the mobile phone, 3347 rubles for a television). As a result, a large amount of HoH people were refused compensation of purchased mobile phones, TV sets and assistive listening devices after the summer of 2010. This happened despite the fully legal procedure of application and correctly filled IPR cards with the explicit indication of an individual's need for a phone with text output, FM receiver and a TV set.

According to the Order No. 240, thousands of deaf and HoH people—for a very limited time from 2008 until the middle of 2010—were able to choose from a multitude of costly hearing aids and devices, and to receive compensation in full. Conversely, those who were unlucky enough to apply for compensation in the summer of 2010 were denied compensation of the mobile phones and TV set, despite the fact that nothing had changed in the federal list of provided TMR.

Responses from the Russian Federation

HoH respondents assessed this policy change as a violation of the Order No. 240 and a violation of their rights, since the receipts and necessary documents for reimbursement were taken from them by the authorities with the promises to reimburse the money "in full" within 3-5 months. The Minister's letter # 30-6/10/2-2561 from February 4, 2010, that cut the chances of HoH people obtaining quality mobile phones and TV sets, was of advisory nature and had no statutory basis. It would appear that the advisory letter was issued with the good intention of preventing abuse of the budget by limiting possibly excess demands by the deaf clients who, due to no announced cost limitations, could purchase the most expensive TV sets. At the time, the audiologists, experts, staff of the Fund of the Social Insurance (structure of the Ministry of Health and Social Development) and HoH interviewees expressed concerns that many deaf people were obtaining expensive hearing aids, TV sets and mobile phones (with reimbursement in full) in order to earn on them by selling. The advisory letter on putting limits on reimbursement of TMR for people with hearing loss, however, was a hard blow specifically to the hard of hearing population—those who need assistive listening devices and quality communication devices the most.

The year 2010 saw the adoption of the "Accessible Environment 2011-2015" Federal programme, which was welcomed by the state authorities. More than 47 billion rubles (1,660,000,000 USD) will be spent within the programme. However, this programme and its good intentions come into direct conflict with the current practices of TMR reimbursement. The declared goal to achieve inclusive education will not fully work as long as thousands of HoH children will not be able to use individual TMR such as an FM-system in mainstream schools, or will not be able to use their low quality, unsuitable and irritating hearing aids.

The respondents stressed the major differences between people with hearing loss and the existing stereotype that a hearing aid alone is enough for a HoH person. Even with an identical hearing loss, one deaf person may have undeveloped social and language skills, while another one, due to early habilitation and early use of technical aids, is able to communicate orally, to talk on the phone to a certain degree, and to obtain university education as a result of their long and ardent training.

"They say that using SMS is enough for the deaf, which means that the cheapest mobile phone will suit. What is then the IPR for? Is it only for the deaf? They do not think of the hard of hearing at all. They paint the deaf and hard of hearing with the same brush. They do not understand that for a disabled person, in order to live and thrive in society on an equal basis with non-disabled people, decent and up-to-date technical aids are needed that will allow them to work and study, not to feed on the state." (Tatiana, 34)

Interview and questionairre responses confirm that the principle of choice for the hard-of-hearing seems to be absent from the procedures of TMR provision.

"What is more costly — to pay for the bulk of unemployed and uneducated persons with disabilities and to herd them, or to allow them to work and live as equals? So hard of hearing need a mobile phone with a high quality sound; it is a necessity. And what quality does a mobile phone for 977 rubles (35 USD) have? This is a humiliation of people with disabilities. It is just a pittance, not an aid!" (Natalia, 26)

130 Russian respondents answered the online quantitative questionnaires. 25% of the online questionnaire respondents stated that they communicated only verbally. 83% used hearing aids, while 3.6% used cochlear implant. 91% had an official status of disability, which allowed them to obtain certain resources and benefits. 49% never used assistive listening devices at school or at the university. 69% of young HoH people relied only on hearing aids or cochlear implants during their education; only 4% had access to an FM-system or an induction loop system during their education. 23% of all respondents evaluated the problem of the lack of access to up-to-date assistive technologies as the main problem in the country for HoH people (after the impossibility of finding a job—65%, discrimination from employers—39%, and the negative attitude of society towards people with hearing loss—29%).

Respondents rated their access to theatre and concerts as "extremely low" (40% and 35% accordingly), and as "average" access to the movies (30%). These numbers are partly because most of them watch accessible captioned movies online or buy DVDs.

On FM-systems and induction loops

"We have these systems in our Head Training and Research and Methodological Center of vocational rehabilitation of persons with disabilities (Moscow State University of Bauman). I used it a little bit (as in small lecture halls I can hear well enough), and for students with the 3rd degree of hearing loss (accordingly with the Russian system — hearing loss of 71-80/85 dB) it is of a big help. But again, it only helps to a certain degree to people with 4th degree (more than 80/85 dB) — only sign language interpreter can help them". (Nickolaj, 26)

Since FM-systems are not mentioned in the federal list of TMR, individuals do not have enough financial possibilities to obtain them.

"FM-system is a great thing, but what about its mad price? For example, price of a part of it, of a Phonak "audio shoe" transmitter — is around 27 thousand rubles, which is often more expensive than the hearing aid itself, that is attached to the "shoe". Transmitter as such costs 30 thousand rubles. How do you imagine someone who has the opportunity to buy such a system, when monthly salaries are about 20-30 thousand?" (Anton, 32)

"I know that in Moscow they visit homes of deaf people go home and check the presence of TV-set there, and only then pay reimbursement (this is lawlessness!)." (Oleg, 34)

Not only the access to or the issue of reimbursement is worrying the respondents, but also the quality of earmoulds, without which their hearing aids could not be used.

"We are going to this audiology centre in St. Petersburg for the fifth time, and we can not get a good earmould; it does not fit. We paid for the expensive earmould, it was done poorly. As a result, we paid again for an inexpensive, again poor quality…money is not returned. Earmould is of an incorrect size and whistles. Please tell me where to complain to an organization and how to at least return my money…" (Anonymous, young female interviewee in St.Petersburg)

At the same time, the Ministry of Health and Social Development announces that in connection with Russia's signing of the Convention on the Rights of Persons with Disabilities, a number of new issues require an appropriate regulatory framework, organizational structure, staffing and financial support. In particular, they refer to: "taking appropriate measures to ensure access of people with disabilities to information and communications, including ICT; improving access for disabled people to quality mobility aids, devices, assistive technologies and services, including their performance at an affordable price…"

Germany and Russia — some preliminary conclusions

Surprisingly, despite the different socio-economic situations in the two countries and different factors that influence the current development of social and disability policy, some problems with the use of hearing aids in both Russia and Germany are similar. These include the price of hearing aids, and as a consequence, the use of inadequate hearing aids (gain input and model). Furthermore, there is a lack of support for the FM-systems and assistive listening devices, especially in education when we consider both countries.

It would appear that the services established are based on the social attitudes towards people with hearing loss, prevailing application of medical assessment of the functional limitation of an individual, and economic capacity of the states.

Based on the interviewees' current responses, the following considerations could be made in the allocation and compensation of the TMR in the Russian Federation and Germany:

• The level of hearing and speech development, the level of socialization (to avoid prescription of expensive TMR that totally deaf person can not use)
• The level of family income of a person with a hearing loss
• Type of employment, professional qualifications and therefore need of professional and social rehabilitation
• Education in the mainstream or specialized school
• Age
• The presence of concomitant illnesses or another disability

Russia could introduce a clear classification of TMR for people with hearing disabilities, taking into account the above criteria. And Russia could enter the specific guidelines on free access to information and communication separately for people with hearing, vision, and other impairments, given the specific and changing needs of persons with disabilities within the same group. Rules should be agreed upon with the organizations of persons with disabilities, that is, by the users of services.

For both countries, implementing a flexible and comprehensive, personalized approach to TMR and TMR compensation based on the users' recommendations, would be essential. The implementation of programs to support research needs of deaf and HoH people as different groups is needed, as well as evidence-based policy development.

General policy issues and challenges to be tackled

There seem to be three key lines in relation to access to assistive technologies, along which policy can be developed:

• Legislation to directly subsidise or otherwise support the purchases of assistive technology for disabled end-users
• Legislation that dictates that all public procurement purchases of goods and services must be accessible. This type of legislation is also tied closely to work on standardisation in order to better define what makes something accessible (i.e., Universal Design)
• Anti-discrimination laws that protect the rights of people with disabilities, especially in terms of their access to goods and services (Pastor, 2009)

The key policy issues to be tackled are (re)-training of health, social and education staff, introducing standards regarding compatibility and norms (e.g. quotas for subtitles), as well as adaptation of public contracts for media and ICT (public procurement). Improved networking among institutions and a clear (easier) legislation concerning the responsibility of the respective cost carrier would be desirable.

The challenges along the way to developing effective policy, can be identified as follows:

• Proactive research and re-investing in health care schemes
• Bridging the gap between social services and medical care
• Introducing informed, flexible universal solutions for different disabilities (text-on-screen helps not only hard of hearing, but people with learning disabilities, people in noisy environments, foreign language learners, etc.)
• Re-training of the service providers, health, social policy and education staff
• Implementation of rights-based approach in Eastern Europe where political will is lacking
• Reaching target groups fully while respecting all disabilities—the needs that go along with some disabilities are more visible than the others, (e.g. accessibility is more often associated with a wheelchair ramp in the Russian Federation and physical disabilities, rather than with sensory impairments such as hearing loss)
• Monitoring quality of services and their assessment