Parents views: A survey about speech and language therapy

Transcription

1 Parents views: A survey about speech and language therapy 1

2 Executive summary NDCS carried out a survey to find out what parents think about the speech and language therapy services that their children receive. The survey was piloted, and then sent out to 1,000 parents; 147 parents returned a questionnaire. 63% of the parents (93) said that their child was having speech and language therapy, and 37% of parents (54) said that their children were not having speech and language therapy. For the children who were receiving speech and language therapy, we wanted to find out what kind of service they were receiving and what they thought of the various aspects of speech and language provision. We also asked about what parents think speech and language therapists do in their work, and what they think could improve the speech and language therapy services that their children receive. For the children not receiving speech and language therapy, we wanted to find out who made the decision that they would not see a therapist, and what the reasons behind that were. Speech and language therapy practice has developed over many years through dialogue with parents, so most of the recommendations in this booklet will be familiar to practitioners. However, they provide a valuable reminder and pointer to good practice from a parent s perspective. This document is especially useful to speech and language therapists who have no previous experience of working with deaf children. Interestingly, many of the findings from this survey echo those from The Bercow Review, which also asked parents for their views, and we have pointed out where these links are throughout the document. The information in this document is intended to complement the professional quality standards Communicating Quality and RCSLT Clinical Guidelines: Deafness/Hearing Loss, by adding the perspectives of service users, parents of deaf children. The findings from this survey point to a number of things that are positive for parents: Most parents had the contact details of their child s speech and language therapist. Almost half the parents were involved in planning their child s therapy programme, and more parents would like to be involved. The majority of parents understood why therapists set certain targets for their child. Nearly three quarters of parents received copies of their child s speech and language therapy reports. Nearly three quarters of parents said that they felt the speech and language therapist had good deaf awareness. Many parents had concrete ideas of what a speech and language therapist does, citing both formal and practical aims such as helping with speech problems, and less formal aspects such as giving a child confidence. Lots of parents told us that their child s therapist worked with other professionals such as their specialist teacher of deaf children and learning support assistants, and that they worked together in a range of ways, including sharing information, meeting up, and giving advice. 2

3 When asked the best thing about speech and language therapy, parents gave a range of answers including improved confidence, improved speech, and the personal support they received from the therapist. We also picked up a number of things that could be better, and were issues for managers and commissioners: Of the 147 parents in the survey, 12% felt that their child was not receiving any support because there was a lack of speech and language therapy services or because there was not enough specialism in deafness amongst therapists in their area. Of the 63 parents who reported waiting times to see a SALT, 23% waited more than three months for a first appointment. A few parents said it was more than a year after referral before their child saw a therapist. A large number of parents (44%) said that the therapist did not check their child s hearing aids or cochlear implant at the start of each session, and 33% did not know if this happened. 52% of parents reported that they were not involved in the planning of the speech and language therapy provision for their child. A quarter of the parents were not shown how they could be working on speech and language therapy targets with their children in their daily lives, and a quarter of the parents said they were not confident in incorporating targets into their child s daily life. Nearly a third of parents did not know if the therapist worked with their child to help them understand their own targets. Out of those who attended therapy appointments at a clinic or hospital, just under half thought it was not a deaf-friendly environment. Parents wanted more therapy for their children, better communication between themselves and the speech and language therapist, and more local therapists with a knowledge of deafness. 3

4 Parents views: A survey about speech and language therapy Introduction A survey was carried out during to find out what parents think about the speech and language therapy services that their children receive. The survey was piloted by 20 parents, and then sent out to 1,000 parents. All the recipients are members of NDCS and listed as parents of deaf children. Of the 147 parents who returned a questionnaire, 63% (93) said that their child was having speech and language therapy, and 37% (54) said that their children were not having speech and language therapy. All responses have been included in this report. We wanted to find out what kind of service the children who were having speech and language therapy were receiving and what they thought of the various aspects of speech and language therapy provision. We also asked parents what they think speech and language therapists do in their work, and what they think could improve the speech and language therapy services that their children receive. For the children not receiving speech and language therapy, we wanted to find out who made the decision that they would not see a therapist, and what the reasons behind that were. Some of the questions were open-ended, allowing parents to really tell us what they thought and felt. Thematic analysis was carried out on these answers using NVivo, a qualitative data analysis software package. The answers were read through and coded into themes, and then the totals taken for each theme. For each question, the chart shows the number of answers for each theme, and the number as a percentage of the total number of answers across all of the themes. Speech and language therapy practice has developed over many years through dialogue with parents, so most of the recommendations in this booklet will be familiar to practitioners. However, they provide a valuable reminder and pointer to good practice from a parent s perspective. This document will be especially useful to speech and language therapists who have no experience of working with deaf children. Interestingly, many of the findings from this survey echo those from The Bercow Review, which also asked parents for their views, and we have pointed out where these links are throughout the document. The information in this document is intended to complement professional quality standards Communicating Quality and RCSLT Clinical Guidelines: Deafness/Hearing Loss by adding the perspectives of service users, parents of deaf children. Part one of this document covers the findings from the surveys of parents whose children were having speech and language therapy, and Part two reports the findings of those whose children were not having speech and language therapy. Part three is based on parents views. It outlines some of the major themes that were identified by parents in the survey, and gives some ideas for helping speech and language therapy services to further improve their services for deaf children. 4

5 Part one: Findings for the children who were having speech and language therapy Demographics Age of child Out of the 93 children, 9% were in the 0 to 4 age group, 28% were in the 5 to 9 age group, 40% were aged between 10 and 14, 19% were aged between 15 and 19, and 3% were aged 20 or over. One parent did not answer this question. Age at diagnosis Parents were asked to report the age at which their child was diagnosed as deaf. 26% were diagnosed between birth and 6 months of age, 40% between 7 months and 1 year, 29% between 2 years and 4 years, and 4% between 5 and 9 years. It is worth noting that since the roll-out of the Newborn Hearing Screening Programme in 2006, children who are born deaf are far more likely to be diagnosed within the first few weeks of life. Many of the children in this survey were not diagnosed through newborn hearing screening, and were identified later on. Level of deafness Most of the children were severely or profoundly deaf (70%). 15% were moderately deaf, 8% had a moderate to severe deafness, and 4% had a mild deafness. Three parents did not answer this question. Type of deafness Parents were also asked what type of deafness their child had. The vast majority of children (76%) who were having speech and language therapy had a sensorineural deafness. 3% had a conductive deafness, 2% had a mixed deafness (a mixture of conductive and sensorineural), 2% had auditory neuropathy, and 1% was reported as having a congenital abnormality. 15% did not answer this question. Amplification used The majority of children wore hearing aids (60%), and 27% had a cochlear implant. 6% used both a hearing aid and a cochlear implant. 4% used no amplification, and 2% of parents specified that their child used a bone anchored hearing aid. Communication Spoken English was the most commonly cited method of communication, with 41% using spoken English as their main method of communication. 26% used a mixture of methods, including a combination of spoken English and British Sign Language (BSL), or a combination of spoken English and Sign Supported English (SSE), for example. 12% used Total Communication, 10% used BSL, and 10% used SSE. 1% used Makaton and one parent did not answer the question. School placement A large proportion of children (49%) attended mainstream school, and 22% attended a mainstream school with a hearing impaired unit. 14% were educated at a special school, and 9% went to a specialist school for deaf pupils. 2% were at college, 2% were at university, and 2% of parents did not answer this question. 5

6 About the speech and language therapy Who referred your child for speech and language therapy? In some cases, parents reported that more than one professional referred their child for therapy, for example, both their child s teacher of deaf children and the audiologist, which is why we have a total of 113 reported referring professionals for 93 parents. Of all those identified as possible individuals who would refer children for speech and language therapy, for this sample, the teacher of deaf children was the most likely to make the referral (36%), followed by a paediatric consultant (16%) and audiologist (12%). 6

7 How long did you have to wait before your child saw a therapist after you were referred? The Department for Children, Schools and Families (DCSF) state in Better Communication that when a child is identified as having a speech, language and communication need, speech and language therapy services need to be ready to intervene quickly and effectively, and The Bercow Report (DCSF, 2008) said that if a child receives the right help early on, he or she has a better chance of tackling problems, communicating well and making progress. Early intervention is recognised as being extremely important, and this includes appropriate access to speech and language therapy services as soon as they would benefit the child and family. In our survey, 52% of parents reported waiting three months or less between referral and their child first seeing a speech and language therapist. However, 46% waited more than three months, and a few waited for up to two years. Of the 63 parents who answered giving a time frame for this question (if we exclude don t know, no answer and not relevant answers, we get a more accurate picture of what waiting times were like for parents who answered this survey) we can see that nearly a third waited less than a month, and 44% waited between one and three months. 11% waited for four to six months, and 6% waited between 7 months and a year. A small number of parents (6%) waited for more than a year. 7

8 What speech and language therapy support is your child currently receiving? This question sought to find out what types of therapy the children were receiving. Children may have been receiving only one type of therapy from the list, or may have been receiving a combination. Speech and language therapy provided at school, including group therapy (14%), one-to-one therapy (30%), or therapists advising teachers and setting targets (22%) is more widely provided than any other type of therapy amongst these parents. Group therapy at a clinic or hospital was the least common type of speech and language therapy received by the parents children. 8

9 Can you tell us why your child receives speech and language therapy support in this way? Answers to this question varied from stating that it was due to the way it was provided in their area, to it being tailored to what their child needs. The most widely mentioned category for answers was it is what my child needs (31%). This category included comments about the therapy being structured the way it is because of a child s deafness or other disability or needs. 25% of parents made comments about the service that their children received being decided by the way local services were organised. This category mostly includes comments on the school or local authority organising it, but also included comments about cochlear implant centres organising speech and language therapy following implantation. 8% highlighted that it was all that was available to their child due to limited local resources, and 14% did not answer this question. 9

10 How often does your child currently see a speech and language therapist? The majority of the children (31%) saw a speech and language therapist once a week or more often. 10% of parents stated that their child had therapy once a week in blocks of either six or eight sessions. This made these responses difficult to gauge, as we are not able to tell if they had one block of sessions a year, or 3, for example, so these responses were recorded in a category of their own. 18% had therapy between once every three months and once every six months, and 5% saw a therapist between once every seven months to once a year. 10

11 Your family s experience of speech and language therapy The questions in this section were used to find out how involved and informed parents were with their child s therapy, and how parents felt about the service their child was receiving. I have the contact details of my speech and language therapist The majority of parents (83%) did have the contact details of their child s speech and language therapist, but 14% did not. 3% said that they didn t have contact details for their speech and language therapist and thought that they needed to have them. 11

12 The speech and language therapist checks my child s hearing aids or cochlear implant at the start of each session The Royal College of Speech and Language Therapists (RCSLT) Clinical Guidelines state that at the beginning of each session the therapist will visually inspect the hearing aid/cochlear implant or other assistive listening device. Therefore it would be reasonable for parents to expect this to happen. It is extremely important that any hearing aids or cochlear implants are working effectively, because if not it will have a negative effect upon the rate of development of spoken language or maintenance of established spoken skills. (RCSLT 2005). 44% of parents said that their child s speech and language therapist never checked their child s hearing aids or cochlear implant at the start of each session, whilst a large proportion of parents (33%) did not know if this happened. Only 12% stated that their child s therapist always did this. 4% stated that their child did not wear hearing aids of any sort, and 1% of parents did not answer the question. We have to assume here that either the parents witnessed the therapists checking hearing aids, or that they asked their children if this happened regularly. 12

13 I have been involved in planning my child s therapy programme The Royal College of Speech and Language Therapists (2005) state that parents should be considered part of the team that supports their child. Involving parents in planning their child s therapy programme is an effective way of strengthening their involvement with the team. 45% of parents had been involved in planning their child s speech and language therapy, and a further 42% of parents said that they were not involved, but would like to be. 10% of parents said that they were not involved, and didn t think they should be, and 3% did not answer this question. It is encouraging to see a large proportion of this sample are either involved, or would like to be involved in planning their child s therapy. 13

14 I understand why the speech and language therapist has set certain targets for my child The majority of parents (77%) said that they understood why the speech and language therapist set certain targets for their child, but 10% said that they did not understand why this was done. This question did not apply to 13% of parents. The speech and language therapist shows me how I can be working on targets during our daily lives Parents told The Bercow Review that they would like more information and guidance about speech, language and communication development and regular contact with their child s therapist (DCSF, The Bercow Report). This suggests that parents want to be able to do all they can to support their child s development in these areas. Our survey suggests that like The Bercow Report, parents want activities and exercises that they can do with their children outside of therapy sessions. The majority of parents (63%) said that the therapist showed them how they could work on targets with their child in their daily lives, but a quarter of parents (25%) said that they were not shown how to do this. 14

15 I feel confident incorporating my child s speech and language therapy targets in our daily lives. The majority of parents (68%) felt confident in incorporating speech and language therapy targets into their everyday lives, but 14% said that they did not. Interestingly, the numbers of parents who answered doesn t apply varied across the three questions; I understand why the speech and language therapist has set certain targets for my child, the speech and language therapist shows me how I can be working on targets during our daily lives and I feel confident incorporating my child s speech and language therapy targets into our daily lives. We should be able to expect that if one of these three questions does not apply to a parent, then all three would not apply. This suggests that there may be parents who are confused about this aspect of their child s therapy, were confused about the wording of the question, or ticked the wrong box when completing the survey. 15

16 The speech and language therapist works with my child to help them understand the therapy targets as appropriate Whilst 30% of parents did not know if the therapist worked with their child to help them understand their therapy targets in an appropriate way, 46% said that their child s therapist did do this. 9% said that this did not happen, and this question did not apply to 14% of the parents. I receive copies of my child s speech and language therapy reports and any words I don t understand are explained to me The Department of Health good practice guidelines Copying Letters to Patients states that when letters or reports are written by one health professional to another about a child, they should be copied to the parent or legal guardian. In our survey, nearly three quarters of parents (72%) received copies of their child s speech and language therapy reports, with 19% saying that they didn t, but would like to, and 9% saying that they didn t receive reports and felt that they didn t need to. 16

17 The speech and language therapist has good deaf awareness Nearly three quarters of parents (72%) said that their child s speech and language therapist had good deaf awareness, with 9% saying the therapist did not. 17% said that they did not know whether the therapist had good deaf awareness or not and 2% gave no answer. Parents of deaf children who responded to The Bercow Review said that they felt there was a shortage of speech and language therapists who have specific training on deafness, and that services should have more specialist therapists available in their areas (DCSF, The Bercow Report). 17

18 The clinic or hospital we go to for appointments is deaf friendly Out of those who went to a hospital or clinic, the majority said that it was deaf friendly. Most of the children (60%) did not attend speech and language therapy appointments at a clinic or hospital. It must be remembered here that for some parents, it is not always necessary for them to attend their child s appointments. A quarter of parents (25%, the majority of parents whose children did attend hospital appointments) said that the clinic was deaf friendly, and 6% said it was not. 18

19 I sometimes go to speech and language therapy sessions at my child s school Only 17% said that they attended speech and language therapy appointments at their child s school. Over a quarter (28%) said that they didn t, but would like to, and another quarter (26%) said that they didn t and didn t think that they needed to. Another quarter (24%) said that it didn t apply to them. It should be remembered here that it is not necessary for parents to attend all their child s speech and language therapy appointments within an education setting. 19

20 Parents opinions This section explores parents ideas about what speech and language therapists do in their work, how therapists work with other professionals and what they thought might improve speech and language therapy services that their children receive. List three things that a speech and language therapist does This was an open-ended question, and therefore many comments addressed multiple themes. The theme that the largest proportion of answers came under were helps with speech (24%), and 17% made comments about therapy helping with communication in general. Help with language development was also one of the most often cited answers, with 13% making comments about this. 6% of comments were on the therapist supporting other professionals. A small number of parents (2%) chose to mention more informal aspects of what a therapist does, and said that the speech and language therapist gives their child confidence. Answers to this question included: Assesses child s needs and sets targets It helps child integrate into hearing world Suggests ways to develop communication skills Gives confidence in areas of speech that child finds difficult Aims the sessions to the child s age and needs and Provides information on next stage of development 20

21 Please tell us what other professionals the speech and language therapist works with The BATOD and RCSLT guidelines on Collaborative working between speech and language therapists and teachers of the deaf suggest that a strong working relationship needs to be built between therapists and teachers of deaf children. This could include sharing information from assessments and sessions, joint input into report writing, developing materials together, collaborative target setting and regular meetings to review development. The Bercow Report states that when respondents were asked about speech, language and communication support in primary schools, nearly half cited teaching assistant support in the classroom and 60% of young people in secondary school said that they received support from teaching assistants. Many young people said that the support they received from teaching assistants was the most helpful formal support. This highlights the important role that support staff such as teaching assistants and learning support assistants have in helping children with their speech, language and communication needs. A quarter of the young people told them that they would like more support from teaching assistants. Researchers for The Bercow Report consulted with parents of all children with speech, language and communication needs. In our survey focusing on deaf children, teachers of deaf children understandably feature more prominently as professionals that speech and language therapists work with. The two groups of professionals that speech and language therapists worked with most often were teachers of deaf children (33% said this) and school teachers (27%). School support staff, such as learning support assistants and communication support workers, were also amongst the most common answers that parents gave (19% of parents said this). 2% did not know which other professionals their child s speech and language therapist worked with, and another four (2%) said that their child s therapist did not work with other professionals. 21

22 How does the therapist work with these professionals? This was an open-ended question, and often answers covered more than one theme. Information sharing, both generally including informal, verbal and written advice (21%) and written information (16%) were amongst the most frequent ways parents said the speech and language therapist works with other professionals. Comments here included: advises teachers on how to develop communication skills keeping them up to date on progress and sending reports of assessments and recommends ways to help child. 20% of parents said that therapists meet with other professionals, 17% said that therapists give other professionals advice, and 4% did not know how their child s speech and language therapist worked with other professionals. Joint working is critical to deliver services that provide effective support (Better Communication, DCSF) highlighting the need for professionals to work with each other to provide speech and language therapy services to children and their families. 22

23 How should therapists work with other professionals? Answers to this question often covered more than one theme. Disappointingly, a large number of parents (28%) didn t answer this question. Sharing information (24%) and giving advice (13%) were the most popular ways that parents thought speech and language therapists should work with other professionals: working together, having good knowledge and understanding of child s ability and work together on progress. suggest to teaching staff ways of incorporating speech and language therapy into learning situations and Communication between school, hospital, parents, teacher s assistant, teacher of the deaf. This was followed by meeting regularly (11%); for example, They should be given time to meet/discuss/coordinate therapy with all the professionals so that they all appreciate the problems and work towards common goals. Only a small number (2%) said that they thought speech and language therapists should receive information from other professionals. Parents preferences for speech and language therapists and other professionals working together is supported by the RCSLT, who say that effective interdisciplinary team work has been demonstrated to promote a better outcome for the individual involved. Therapists can work with school staff by advising classroom management, lesson planning, providing language programmes, and training school staff (RCSLT 2005). Aiming high for disabled children also highlights the benefits of multidisciplinary working by saying where families have coordinated support, through joint planning, commissioning, assessment and provision, or through a key worker or lead professional, disabled children and their families are more likely to benefit from better coordinated support from accessible, knowledgeable professionals in both universal and specialist services. 23

24 The best thing about speech and language therapy is Although this question asks about the best thing, some answers covered more than one theme, and so multiple themes were coded for some answers. Answers to this question varied from the outcomes focused benefits of speech and language therapy such as improved speech (14%), to the practical aspects such as the fact that it takes place in school and so does not disrupt the school day (4%), to more subtle and informal themes such as improving a child s confidence (9%), the personal support from the therapist (15%) and the child enjoying the therapy (4%). Comments included: That it helps to improve speech and consequently helps build confidence and communication. Someone to care. That the therapist has experience in working with deaf children and They are very aware of my child s strengths and weaknesses and adjust therapy accordingly. Some parents chose not to answer this question (14%) and 2% of parents said that there was not anything good about speech and language therapy for their child. 24

25 Please list three things that would improve speech and language therapy Some parents gave three answers to this question, and some did not. The most frequent theme that appeared in answers was that parents would like more speech and language therapy to be available to their child (27%). 9% wanted there to be better communication between themselves and therapists, and 5% wanted better communication between therapists and the other professionals that work with their children. 3% said that nothing was needed to improve the speech and language therapy that their child received. A large number of parents (18%) did not answer this question. Answers to this question included comments such as: More deaf awareness More communication with family More joined up communication with other professionals so that they are aware of bigger picture More of it without having to fight and Parental involvement. In research carried out in 2008 with parents of children who have cochlear implants, the Ear Foundation found that parents were not entirely satisfied with the amount of therapy their child was getting, and the length of time over which speech and language therapy programmes were conducted. This echoes our finding that parents want more speech and language therapy for their child, more consistent therapy, and therapy over a longer period of time (for example, through secondary school). Parents in our survey said that there were not enough local and qualified speech and language therapy staff. The Bercow Report also found this. The Bercow Report additionally found that parents of deaf children who responded to their consultation thought that there was a shortage of SLTs with specific training. The Ear Foundation research also found that parents felt that therapists needed more training and it highlighted a lack of signing professionals. The Communication Trust s publication Explaining speech, language and communication needs states that studies have shown that the level of specialist knowledge and expertise in supporting children s needs is of crucial importance. This supports the views of parents in our survey that knowledge of their deaf child s needs is essential. Alongside wanting more therapy, parents from our survey wanted therapy to continue for as long as it was beneficial to their children, and for it to be consistent. Some stated that speech and language therapy services were not available to children in secondary schools in their area; this is backed up by The Bercow Review finding (reported in The Bercow Report) that speech and language therapy often stops when a child enters secondary school, despite transition being an important time when services such as speech and language should be available. Several key documents agree with the parents who told us that they would like more and better communication between themselves and their child s therapist about parents input into the service that their child receives. Information gathering and listening to the individual, their parents or primary caregivers are essential aspects of developing a comprehensive picture of the deaf individual s communication abilities and difficulties (RCSLT, 2005). The Bercow Report said that parents saw themselves as members of the team and welcomed the increasing recognition from professionals of their vital role. Finally, Aiming high for disabled children suggests that empowerment is a key issue, and that people should be able to engage constructively with service providers in shaping service provision where possible. 25

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27 Part two: Findings for the children who were not receiving speech and language therapy Demographics Age of child Of the 53 not receiving speech and language therapy, 4% of children were in the birth to 4 years age group; 13% were aged between 5 and 9; 48% were aged between 10 and 14; 26% were in the 15 to 19 age group; and 7% were aged 20 years or above. Age at diagnosis 13% of children were diagnosed as deaf between birth and 6 months old; 26% between 7 months and 1 year old; 48% between 2 years and 4 years old; 9% between 5 and 9 years; and 2% were aged 10 or older when diagnosed. One parent did not answer this question. Level of deafness Most of the children in this sample who did not have speech and language therapy had severe or profound deafness (24% with severe deafness and 24% with profound deafness), and 11% severe to profound. There was a fairly even spread across other levels of deafness with 15% having a mild deafness, 11% moderate to severe, and 11% moderate deafness. 2% had a mild to moderate deafness. One parent (2%) did not answer this question. Type of deafness Most of the children in this sample who did not have speech and language therapy had sensorineural deafness (72%), with 9% having a conductive deafness, and 2% having a mixed deafness. 17% of parents chose not to answer this question. Amplification used As with the children who were having speech and language therapy, the type of amplification most used by children who were not having therapy was hearing aids (74%). 19% had a cochlear implant, and 4% specified that their child had a BAHA. 2% said that their child did not use any amplification technology, and one parent did not answer this question. Communication Spoken English was the most frequently reported method of communication for this sample amongst children who were not having speech and language therapy (63%), followed by those using a mixture of communication methods (22%). 7% used Total Communication, 4% used BSL, and 2% used SSE. One parent did not answer this question. School placement Most of the children in this sample who were not having speech and language therapy attended mainstream school (67%), with 11% going to a mainstream school with a hearing impaired unit, and 11% going to a special school. 4% attended a specialist school for deaf children, 4% were home schooled, 2% were at university, and one parent did not answer this question. 27

28 Why children are not receiving speech and language therapy Whose decision was it that your child would not see a speech and language therapist? Parents said that the decision for their child not to have speech and language therapy was usually made by the school or local authority (33%) or the speech and language therapist themselves (28%). A small number of parents (7%) said that the decision was theirs. 28

29 Please tell us why you did not want your child to see a speech and language therapist This question did not apply to the majority of parents whose children were not having speech and language therapy, as it was not their decision. However, of those it did apply to, most said it was because their child did not need it (6%) and 2% said it was because they themselves were able to support their child s speech and language therapy needs. Do you know why it was decided that your child would not see a speech and language therapist? 28% of parents said that their child did not need therapy. A large number of parents said that there was not enough local provision to allow their child to have therapy (26%) or that there was a lack of specialist knowledge of deafness in their local area (6%). 6% said that their child did not have speech and language therapy because they had met their targets and it was no longer needed. Comments in response to this question included: Our therapist left their job and moved and has not been replaced. As child has a cochlear implant, it is left to the teacher of the deaf and implant centre to suggest strategies. Local speech therapist told me they are not involved with implanted children. It was felt that child no longer benefited from seeing the therapist, they continued to get support in group sessions with staff trained by therapist. This has worked well. and Child hasn t had speech therapy for a whole year. We were informed that the borough had run out of money and was unable to provide a speech therapist in this area. Sach and Whynes (2005) found that children were not receiving speech and language therapy because of a shortage of therapists, sometimes even though it was stated that they were entitled to it in their statements of special educational need. This supports our finding here, where 26% of parents said their child was not having therapy due to a lack of local staff. The DCSF s Bercow Report also states that there was something of a postcode lottery across the country. Some parents in our survey said that their child was having speech and language therapy, but that the therapist left and was not replaced; this is also consistent with The Bercow Report finding that there was a high turnover rate within speech, language and communication services. Bercow also noted issues like therapists leaving and not being replaced. 29

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31 Summary of findings Things that were positive for parents Most parents had the contact details of their child s speech and language therapist. Almost half the parents were involved in planning their child s therapy programme, and more parents would like to be involved. The majority of parents understood why therapists set certain targets for their child. Nearly three quarters of parents received copies of their child s speech and language therapy reports. Nearly three quarters of parents said that they felt the speech and language therapist had good deaf awareness. Many parents had concrete ideas of what a speech and language therapist does, citing both formal and practical aims such as helping with speech problems, and less formal aspects such as giving a child confidence. Lots of parents told us that their child s therapist worked with professionals such as the teacher of deaf children and learning support assistants, and that they worked together in a range of ways, including sharing information, meeting up, and giving advice. When asked about the best thing about speech and language therapy, parents gave a range of answers including improved confidence, improved speech, and the personal support from the therapist. Issues for managers and commissioners things that could be better Of the 147 children in the survey 12% of parents felt that their child was not receiving any support because there was a lack of speech and language therapy or because there was not enough specialism in deafness amongst therapists in their area. Of the 63 parents who reported waiting times to see a SaLT, only 76% waited under three months. A few parents said it was more than a year after referral before their child saw a therapist. A large number of parents (44%) said that the therapist did not check their child s hearing aids or cochlear implant at the start of each session, and 33% did not know if this happened. 52% of parents reported that they were not involved in the planning of the speech and language therapy provision for their child. A quarter of the parents were not shown how they could be working on speech and language therapy targets with their children in their daily lives, and a quarter of the parents said they were not confident in incorporating targets into their child s daily life. Nearly a third of parents did not know if the therapist worked with their child to help them understand their own targets. Of those who attended therapy appointments at a clinic or hospital, just over half thought it was a deaf-friendly environment. Parents wanted more therapy for their children, better communication between themselves and the speech and language therapist, and more local therapists with a knowledge of deafness. 31

32 Part three: Parents views This part highlights some of the major themes that were identified in parents responses to the survey questions, and provides some useful ideas to help further improve speech and language therapy services for deaf children. Many of these ideas will be familiar to therapists, and will have been included in training, but this section serves to help remind and expand upon what parents feel is important. This section is particularly relevant to therapists who have little or no experience of working with deaf children. Understanding deafness Parents feel that it is important for therapists to understand individual children s deafness and the impact of this on their communication and language development. To achieve this in practice, it is important to have a thorough and up to date understanding of the different types and degrees of deafness, how this impacts on communication and language development and how the impact can differ from child to child. This is included in training, but should be revised if a therapist is working with a deaf child some time after training. be aware of other factors that can affect a child s communication and language development for example age at diagnosis, parents acceptance of deafness or home language. obtain information about a child s deafness from their parents, and from other professionals who already work with the child, for example a teacher of deaf children. ensure that within the team there are sufficient therapists with a good knowledge and experience of working with deaf children to meet local need and advise and support colleagues who are developing their knowledge and skills. If there are insufficient resources, seek advice from other borough SLTs/services. be familiar with, and put into practice the RCSLT Clinical Guidelines: Deafness/Hearing Loss, especially the information about Clinical History Checklist in the Assessment section. The best thing about speech and language therapy is that the therapist has experience in working with deaf children The best thing about speech and language therapy is understanding, awareness and practical knowledge of working with deaf children One thing that would improve therapy would be more understanding of hearing impairment with complex needs. 32

33 Communication Parents feel that it is important for therapists to understand and respond to individual children s communication needs. Implications for practice: Before you begin working with a deaf child, find out from the family and/or the child their preferred way of communicating. Parents will often be able to inform you of any subtle and non-formal communication strategies and language that their child uses. If parents are not yet sure of how their child will communicate (which may be the case with newly diagnosed babies), they may look to you and other professionals for advice. If you are not already familiar with the different communication methods that deaf children can use, the NDCS website has useful information and publications that can help you find out more. It is important that families and professionals nurture communication, regardless of the method, and it is important to understand that communication can vary over time as a child develops. Ensure that you are familiar with, and put into practice, the RCSLT Clinical Guidelines: Deafness/Hearing Loss, especially the information about Sign Bilingualism in the Assessment section. The best thing about therapy is that they make an effort to recognise my child's multilingualism The best thing about therapy is an accurate picture of the child's level of language Technology Parents feel it is important for speech and language therapists to understand and be familiar with the different equipment used by deaf children. To achieve this in practice, it is important to become familiar with different types of hearing aids, cochlear implants and radio aids, and have regular training on this as the technology changes. understand the benefits and limitations of the technology, and how the surrounding environment can affect listening conditions. The NDCS website provides information and publications on the different kinds of technology that deaf children can use. identify and ensure optimal amplification during speech and language therapy sessions. If the deaf child you are working with wears a hearing aid or cochlear implant, and if the session requires the child to use their hearing aid or implant, check it is working effectively at the beginning of the session. If you do not feel confident in doing this, find out how you can get information on checking audiological equipment. make sure that you are wearing and using radio aids appropriately and correctly. Training should be available for speech and language therapists in using radio aids. be familiar with, and put into practice the RCSLT Clinical Guidelines: Deafness/Hearing Loss, especially the information about Checking of Auditory Device and Functional Use of Aided Hearing in the Assessment section. One thing that would improve therapy would be optimum use of cochlear implant 33

34 Therapists should work with other professionals by having more deaf awareness and knowledge of BAHAs etc. One thing that would improve therapy would be someone who understands how a cochlear implant works Helping parents to understand your role It is important for parents to fully understand your role as a speech and language therapist. You should ensure that you explain to parents how speech and language therapy can help their child. Help them to understand what you will be doing with their child. Check their understanding of your role, and what their hopes are for the speech and language therapy for their child. explain the relationships between speech and language therapists and other professionals, especially teachers of deaf children. encourage parents to ask questions and feel confident in working with you to achieve the targets set for their child. explain any words or phrases that parents are not familiar with. give your contact details to parents, and let them know the best times and ways of contacting you if they need to ask questions in between sessions or discuss appointment times. The speech and language therapist supports child s development The speech and language therapist coordinates with professionals and the family Helping children to understand your role Parents feel it is important that children understand why you are working with them and what it will involve. To ensure this, you could do the following: Make it clear to the child that they can ask you questions at any time, and when they do, answer their questions clearly and in a way that is relevant to them. It may be useful to do this with the child s parents present, so that everyone is clear on how you are going to work together. Ask the child for their opinion about speech and language therapy (when this is appropriate), and their thoughts on what they want to work on, and how they would like to do this. The speech and language therapist has explained it and given child understanding 34

35 Planning the speech and language therapy programme Parents want to be involved in the development and review of speech and language therapy programmes for their child. Implications for practice: Discuss with parents what should be included in their child s programme of therapy so that they can help ensure it is the most appropriate programme for their child and are committed to supporting its implementation. If the child s family have any concerns about the programme developed for their child, listen to them and address their concerns. Keep parents informed of progress and any proposed changes to their child s therapy programme. It is important that you answer any questions they may have and make sure that they understand the changes. Involve parents in the review of their child s programme and with setting new targets if this is appropriate. The speech and language therapist sets targets and activities for language improvement The speech and language therapist provides information on the next stage of development I would value more communication [from the speech and language therapist] with the family Helping parents to work on targets with their child Parents feel it is important for them to be confident in supporting their child to achieve the targets set out in the programme. Implications for practice: Help parents to feel confident when working with their child on the tasks you set. Explain what you would like them to do and how this will help improve their child s communication skills. It may be helpful to base this on what they are already doing. Give parents general ideas and specific activities to support their child s speech and language programme at home and try to link these to their individual family/school situation and daily routines. Discuss how easy it has been for them to do these and any reasons they have not been able to do them. Consider the need and demand for workshops for parents where they can develop their skills and knowledge in supporting the development of their child s communication skills. The speech and language therapist advises of exercises we can do at home The best thing about therapy is that it provides parents with ideas and info about how to stretch and develop communication skills into the next level 35

36 Involving parents in speech and language therapy sessions Parents feel that, when it is appropriate, you should involve them in the sessions you undertake with their child. It is important to invite parents to speech and language therapy sessions when it is appropriate. invite parents to meet with you/contact you to talk about their child s speech and language therapy outside of therapy sessions. This can give both you and the parents the chance to address any issues, ask any questions, and update each other on progress. The best thing about therapy is that there has been a continuity of personnel through primary and secondary school so my child feels happy and relaxed with therapist One thing that would improve therapy would be clear objectives Involving the family in programme development Parents feel that it is important that their family is involved in developing the speech and language therapy programme in a way that is appropriate to the child s age and level of understanding. This can be done in the following ways: Ensure that the child is clear about what they will be doing, what they are aiming for, how the family can comment on the programme and how targets will be agreed (if this is appropriate). Families value input into this process at different levels and in different ways; you will find out what kinds of involvement will be appropriate as you work with the family. Any changes that you make to the programme or targets should be communicated clearly to the child and their family to keep them up to date and to avoid confusion. Notify the child and family of any changes you may make to planned sessions and explain why these changes have been made. Involve the child and family in setting classroom or homework activities and enable them to comment on if and how they succeed. The speech and language therapist gives us ideas on games to make learning fun The best thing about therapy is that it is very structured and consistent very aware of my child's strength and weaknesses and adjusts therapy accordingly. 36

37 Encouraging children to be confident Parents feel it is important that the child feels comfortable and confident in undertaking new activities. Parents said they appreciated it when the therapist helped their child to feel confident about their speech and language therapy. This also helped raise their child s self-esteem and their confidence in communicating with peers and adults. There are many things you can do to help a deaf child feel confident throughout their therapy programme. For example: Ask the child what frustrations they have when communicating with school staff or friends, if any, and work to support these through the programme. Find out how the child wants their thoughts to be fed back to the relevant staff. Value their opinions on their own progress. If appropriate, support the child in their classroom. You will need to work with school staff to do this. If appropriate, set up a social skills group with the child s peers. Support them with Live English skills appropriate to their age, for example playing games with a group of friends, going to another class to pass a message to a teacher, going to the local shop and buying lunch. Identify what each child already does that is successful for them and build upon this in functional everyday situations. Develop their understanding of what works for them. If it is appropriate in your setting, work with the deaf child s hearing peers to develop their skills in communicating with deaf children. The best thing about therapy is the Live English Programme, it s great fun and builds up confidence. The best thing about therapy is it gives my child the confidence and ability to maintain [their] position in hearing class and school. One thing that would improve therapy would be ensuring child has sense of achievement when progress is made, no matter how small reward/stickers/stars etc. The importance of communication in everyday life for a deaf child Parents feel it is important that deaf children are equipped with the communication skills to enable them to access and participate in society. It is important to ensure the child understands how to participate in conversations with groups of peers and adults in a way that is appropriate to the situation help the child with strategies to use if communication breaks down or becomes difficult ensure the child is aware of social trends appropriate to their age to enable them to participate in social conversations with their peers if appropriate, develop a Live English Programme to work on specific skills be familiar with, and put into practice, the RCSLT Clinical Guidelines: Deafness/Hard of Hearing, especially the information about Communication Ability (Social and Interaction Skills) in the Assessment section. 37

38 The speech and language therapist gives child methods to use to help them in school The best thing about therapy is that our child simply could not cope with school life without this support One thing that would improve therapy would be more involvement of hearing peers to increase their understanding. Working with other professionals Parents feel it is important that the family is at the centre of all multidisciplinary collaborations, and that they are not confused by the roles of the many professionals working with their child. Practical points to note: Ensure parents are aware of your role and how you relate to the other professionals who may be supporting their child such as audiologists, ENT specialists, teachers of deaf children, educational audiologists, educational psychologists, communication support workers, teaching assistants, class teachers, and social workers. Ensure regular contact with the other professionals who support the child to develop joint approaches to helping the child progress and reviewing programmes and strategies. Seek parents consent for sharing information with other professionals working with the child to ensure interventions and support strategies are coordinated and all those working with the child are aware of changes in circumstances that may be significant. Copy any letters you send to other professionals to parents, and when appropriate, invite them to any meetings you have with them. Parents should also be given copies of any meeting notes or reports that have been produced by professionals working with their child. Parents value being kept up to date on who is working with their child and how they are proceeding. Keep in regular contact with the family s key worker if they have one. Ensure you are aware of multi-agency information sharing protocols developed jointly between primary care trusts and local authorities. Discuss with parents who they see as their key worker and want as their key worker, what they understand of roles and how they want input; for example, do they prefer joint visits or seeing the speech and language therapist separately? Ask for feedback on how services are being delivered, and if they have any questions about services. Be familiar with, and put into practice the RCSLT Clinical Guidelines: Deafness/ Hearing Loss, especially the information about the Role of the Interdisciplinary Team in the Assessment section. The best thing about speech and language therapy is the involvement of professionals who have knowledge of child deafness and know how to help One thing that would improve therapy would be [for therapists to] continue to educate appropriate professionals on needs of child and how to help child get to desired outcomes Speech and language therapists could work with other professionals by giving them targets to work for the same as at home 38

39 Speech and language therapists should work with other professionals by speaking to each other and any paperwork completed about your child is copied to the parent Helping school staff and staff in early years settings feel confident about working on speech and language therapy targets with deaf children Parents feel it is important that all professionals who support your work with a deaf child fully understand the expectations of their role. To make sure that other professionals working with children on speech and language therapy programmes are confident in doing so, consider the following: If you work with a teaching assistant, or other member of school staff, work with the school to ensure that time and space is given for you to do this, and that they understand the importance of collaborative working regarding speech and language therapy. School staff may not be familiar with the language used in speech and language therapy reports or discussions about therapy programmes. Ensure that they have understood the relevant terminology and encourage questions and feedback from professionals. It is important that time is set aside for this, so work with school staff to ensure that time and space is allocated. Find out from staff if there are any barriers to completing targets and activities and support them with overcoming them. Highlight how much of this work can benefit the whole class. Many parents have ideas on how they think their child could benefit from working closely with school staff, so involve them whenever it is appropriate. Parents feel it is useful when work set by their child s speech and language therapist is at the same level and pace for both parents and school staff. Be familiar with and put into practice the RCSLT Clinical Guidelines: Deafness/ Hearing Loss, especially the information about the Role of the Interdisciplinary Team in the Assessment section and information about Classroom Management in the Management section. Speech and language therapists should have a multidisciplinary approach and awareness of what everyone is working towards and supporting each other s individual speciality The best thing about therapy is that it is on site and integrated into a general educational plan One thing that would make therapy better would be more input via parents and school teacher and teaching assistants The speech and language therapist helps work planning at school The best thing about therapy is that it identifies specific areas that my child has trouble with and provides the teacher s assistant with games to practice accordingly 39

40 Keeping parents informed assessments, reports and meetings Parents feel it is important that they are informed of all meetings about their child and of all assessments their child undertakes. There are various ways to ensure this: Invite parents to regular meetings to discuss the work you are doing with their child. These are important meetings for parents, where they find out about their child s progress, and what the next steps will be for them and their child. If this is not possible, for example, if distance is an issue, set up phone conversations at a suitable time. Inform parents of any assessments you will be completing with their child and, if appropriate, invite parents to attend these sessions. If parents are not able to attend meetings with you and other professionals, it is still important that they are informed of discussions and decisions. You will know the most appropriate ways to do this for each individual family. Allow parents space and time to ask questions about written documents during meetings. Ensure parents receive copies of any reports or written documents about their child. Ask for feedback regarding reports and paperwork and how accessible/useful these are for individual families. Be familiar with, and put into practice the RCSLT Clinical Guidelines: Deafness/ Hearing Loss, especially the information about the Role of the Interdisciplinary Team in the Assessment section. One thing that would improve therapy would be more phone calls from SaLT to parent to update and motivate The speech and language therapist works with other professionals by keeping them up to date on progress 40

41 Useful publications BATOD and RCSLT (2007) Collaborative working between speech and language therapists and teachers of the deaf. The Communication Trust (2009) Explaining speech, language and communication needs. Department for Education and Skills (2006) Information sharing: Practitioners guide, Integrated working to improve outcomes for children and young people. Department for Education and Skills (2003) Developing Early Interventions / Support Services for Deaf Children and Their Families. Department of Children, Schools and Families (2008) Better Communication: An action plan to improve services for children and young people with speech, language and communication needs. Department of Children, Schools and Families (2008) The Bercow Report: A review of services fo children and young people (0-19) with speech, language and communication needs. Department of Children, Schools and Families (2007) Aiming high for disabled children: Better support for families. Department of Health (2003) Copying letters to patients: good practice guidelines. Department of Health (2003) Improving the patient experience: Friendly healthcare environments for children and young people. Ear Foundation (2008) Children with cochlear implants: What do they need and what do they get? Report to the National Deaf Children s Society. Every Child Matters (2006) Making it happen: Working together for children, young people and families. John Ford, Breege MacArdle, and Wendy Martin (2003) Models for effective multi-disciplinary working: theory and statements of experience. Royal College of Speech and Language Therapists and British Association of Teachers of the Deaf (2007) Collaborative Working Between Speech and Language Therapists and teachers of the Deaf. Royal College of Speech and Language Therapists (2006) Communicating Quality 3: RCSLT s guidance on best practice in service organisation and provision. Royal College of Speech and Language Therapists (2005) Royal College of Speech and Language Therapists: Clinical Guidelines. Sach, Tracey H. and Whynes, David K. (2005) Paediatric cochlear implantation: the views of parents in International Journal of Audiology, 44:7, pp

42 NDCS is the national charity dedicated to creating a world without barriers for deaf children and young people. NDCS Freephone Helpline: (voice and text) [email protected] Published by the National Deaf Children s Society ISBN Dufferin Street, London EC1Y 8UR Tel: (voice and text) Fax: NDCS is a registered charity in England and Wales no and in Scotland no. SC NDCS January 2010 This publication can be requested in large print, in Braille and on audio CD. 42