Seen, heard, included – Family Fund full project report

Providing ways for families to share their experiences, so they can influence lasting change on issues that matter to them is fundamental to our mission.

Family Fund was a partner in a project funded by Scottish Government as part of the Disabled Children and Young People’s advisory group, between November 2022 – March 2023.

The purpose of the project was to:

• Identify, and develop, tools and methodology to support the meaningful engagement and participation of disabled children and young people with complex needs, whose voices are rarely heard, and their families, and share learning on these approaches; 
• Capture what matters to this group disabled children and young people and their families within the context of effective planning and effective support;
• Contribute to the design and development of the National Care Service and the National Transitions to Adulthood Strategy.

We asked families to share their views via interviews and our ongoing Family Poll, in a very remote rural area in March 2023. Data was collected in December 2022 and March 2023.

Summary

Only a small number of Family Poll families (around 8%) in Scotland told us that they had or were in the process of, transferring to adult services. Despite the small numbers it was striking how few families felt strongly and consistently positive about their experience of the transition from adult to child services for their child or young person.

Themes were identified for what was working well and points of improvement for the transition to adult services.

Peer support, support from trusted professionals and organisations, and consistent relationships were identified as key facilitators of a good transition experience. A clear pathway for continuation of services families had already been accessing was identified as helpful.

Structural challenges to a good transition between adult and child services were identified- such as service availability in a local area and staffing challenges in local services. Additionally, children’s services were not always mirrored by a service suitable for young people.

Some families reported a gatekeeping mentality in some services which they believed led to their young people being denied services they were eligible for. The expectations of service providers that young adults would be able to advocate for themselves was not always considered realistic by parents/carers. This led to some parent/carers feeling that they had to have an advocacy role for children and young people as services were only available to those who asked.

Families who live in very remote rural areas faced particular challenges, in terms of physical distance to specialist services and lack of alternatives if a service wasn’t suitable. To some degree, online services mitigate some of these challenges, but not all services could be successfully delivered online.

Although the focus of the research was on transitions between child and adult services for disabled or seriously ill young people, many families reported wider community challenges. Families felt that they were unsupported in their community and that better awareness amongst the wider public would help them and their family.

Methods

Interviews

Barrier identified

A local third sector organisation working with disabled children and young people and their families advertised the opportunity to take part in the research- using word of mouth, social media, and a mailing via local schools. Family Fund provided a flyer and shared information about the open drop-in session on our website and social media. A local BBC radio station broadcast an interview with Family Fund’s Partnership Manager, sharing information about the session and Family Fund grant support.

Two face-to-face sessions ran over a weekend in March 2023, in local community facilities. The first was an all-day, open drop-in session and the second ran concurrently to a regular activity session for children with additional support needs, organised by the local third sector organisation. This provided an opportunity for families on premises, whilst children attended the session, to ‘drop in’ to a separate quiet room and participate if they chose to do so.

In addition, families were offered the opportunity to arrange a separate one- to-one phone/ Microsoft Teams call, were given an information sheet and gave their written consent prior to taking part in a semi-structured qualitative interview. All participating families were offered a £30 voucher for a local supermarket as an acknowledgment of them giving up their time and sharing their views and experiences.

Four families raising disabled children and young people took part in one-to-one conversations with Family Fund, either face to face or on Teams. One of the families was raising a young adult aged 18 and another of the families with multiple children included an older young person who has autism too. Families were asked about their needs and expectations in relation to effective planning and effective support. The families all lived in an area classified as ‘very remote rural’ in the 8-fold Scottish Government Urban Rural Classification, 2020. All names in quotes have been changed to protect the anonymity of those taking part.

Family Poll

Our Family Poll is a regular survey shared with a random selection of families who have had support from Family Fund, most recently 9-12 months before the date of the survey. We ask a range of questions about the experiences of families raising a disabled or seriously ill child or young person, and these include regular recurring questions as well as those in response to specific calls for evidence.

In Scotland in December 2022 and March 2023 additional questions were included, relating to experience of young people’s transition to adult services; parent/carers experience of caring; and awareness of existing Scottish government resource in this area.

Both quantitative and qualitative questions were included, and findings presented here.

102 Scottish families responded to the December 2022 Scottish Family Poll and 110 families responded to the March 2023 Family Poll.to social housing options, and housing support.

Key findings

Making the transition to adult life

Findings from Family Poll

Only 9% of families had either transferred from children’s to adults’ services or had begun the process of doing so. This was a small number, but it was clear that no families felt very positive about the transition, and a number felt extremely negative about their experiences.

Question: Have any of your disabled children transitioned from children’s to adults’ services, or have you begun the process of planning for your child’s transition? 102 responses.

• Yes = 9 (9%)
• No = 87 (85%)
• I don’t know = 6 (6%)

Question: Planning has been person-centred around my young person. Nine responses.

• Strongly agree = 0 (0%)
• Agree = 3 (33%)
• Neither agree or disagree = 3 (33%)
• Disagree = 1 (11%)
• Strongly disagree = 2 (22%)

Question: Support has been coordinated across all services. Nine responses.

• Strongly agree = 0 (0%)
• Agree = 2 (22%)
• Neither agree or disagree = 3 (33%)
• Disagree = 1 (11%)
• Strongly disagree = 3 (33%)

Question: Planning for my young person’s transition began in a timely fashion. Nine responses.

• Strongly agree = 0 (0%)
• Agree = 2 (22%)
• Neither agree or disagree = 3 (33%)
• Disagree = 0 (0%)
• Strongly disagree = 4 (44%)

Question: My young person has got the support they need. Nine responses.

• Strongly agree = 0 (0%)
• Agree = 2 (22%)
• Neither agree or disagree = 2 (22%)
• Disagree = 2 (22%)
• Strongly disagree = 3 (33%)

Question: My young person has had access to the information they need. Nine responses.

• Strongly agree = 0 (0%)
• Agree = 3 (33%)
• Neither agree or disagree = 1 (11%)
• Disagree = 1 (11%)
• Strongly disagree = 4 (44%)

Question: I feel supported as a family/member carer of a young person transferring to adult services. Nine responses.

• Strongly agree = 0 (0%)
• Agree = 2 (22%)
• Neither agree or disagree = 2 (22%)
• Disagree = 1 (11%)
• Strongly disagree = 4 (44%)

Supporting young people

One family described their views on the level of support available to young adults, especially in relation to planning: 

“Just a note with the transition question. My eldest son is fully in adult services now and we had no transition at all. Nothing. My younger son is now 16 and should have started transition at 14.5 and again absolutely nothing.”

Growing up

Many families framed their worries and concerns about their children’s future around making a successful transition into adulthood:

“Cost of living. Child transition to adult services”

“My son’s future”

“My son getting older and coping with life as he gets older and how his condition will affect him”

“my autistic son’s future as he is getting older”

“My daughter is 12 and becoming an adult”

“Every single day is a learning day and although Emma masks outside I feel this is such a important year for her. This will be her last year at school and I don’t know what the future holds for her.” This respondent went on to highlight further issues around supporting her daughter into adulthood: “Energy and food prices etc going up, Emma missing school and losing her college place as well, due to another girl leaving and her not being able to go. She wants to learn to drive just now, which she is doing, but this is also a added financial pressure”

Theme 1: Informal support

Asked whether their family feels supported with transitions, one parent commented: 

“Probably not, I feel nervous about the future. We don’t know what to expect. I ask a lot of questions to the staff who work at the school, who have been there 20 odd years, and have watched children go through and see what do they do now and what’s available. And learning what’s available from other people that have been in the situation rather than any services helping with what any future might look like.” Family 3 

This emphasises the importance of enabling and facilitating informal and peer support networks. 

Theme 2: Formal support

Another family highlighted the value of effective formal support with transitions where it was offered: 

“With Liam moving on from school, we’ve been speaking to Skills Development Scotland. And he’s been really good to speak to.” Family 4 

“He’s going to be 16, but he’s not emotionally maturing. So that’s why worries me about the workplace and what people are like. And is there anything else he can be doing, you know?” Family 4 

Theme 3: Continuity, and sustaining the things that matter to families

One family stressed the importance of trying to sustain continuity for the things that their child valued in the transitions process:

“At the present moment in time my daughter is moving from children’s to adult services. The children’s services night and day had Wi-Fi Internet and all that sort of stuff which they don’t have in adult services, for things like Netflix. Things they can’t provide in adult services because they don’t have the facility. Things like Peppa Pig – she just likes it. They can’t provide that.” Family 1

A key barrier was sustaining the young person’s voice:

“One of the problems we did have was with Sophie’s communication board. And when we first went there the staff in adult services didn’t really know how it worked. So that was a big problem. And after a month, six weeks, we still have problems with the communications board because for staff, it’s the first time they’ve encountered it.” Family 1

Shifting goalposts

Family 1 also discussed the difficulty of planning for transitions when key dates are changed by services: 

“In January we had a meeting with the support from school and head of lifestyles and the school said the date for leaving school has been moved and its now the 21st of April. So, they had moved it full month earlier and we found out in January, so it’s now full steam ahead to get the transition from school to lifestyles. To be fair to the school they said there’s a parade in May and we can go to that – but her pals won’t be there.” Family 1 

Theme 4: Transitions to adulthood and renewed pressure on informal/family support 

Family 1 framed the transition to adulthood in terms of the support available in adult services compared with children’s services. They feel it brings additional pressures on family support as they tried to maintain continuity for their child: 

“It’s so much harder. You have to think, has she got all her medication, has she got enough medication in her bag? Whereas before, in children’s services, they just looked after it, and now you’re just having to think the whole time to make sure everything is in place. And there’s loads of other things You can’t enjoy the break because you’re having to do things like that. That’s just a hassle that we don’t need.” Family 1 

Planning for key life transitions 

For Family 1, the transition to adulthood also brought with it a focus on much wider transitions for the whole family: 

“When Sophie was 16, we had a word with the social worker about having supported living. For people in our position there is no way they can find their own supported living and if someone passes away, they are left. The person, the child, finds it really hard when that person is 

not there So, we decided to put into place some supported living when we are still here and still able and fit to make sure that is sorted. So, we know that before we go Sophie is in a place that she likes. She’s getting cared for.” Family 1 

In the above quote, the process of transition planning to adulthood was framed by long term, end of life planning for the parents, to try and secure a safe future for their child. 

This family also reflected on their lifelong experience of supporting their child, and the moments of tension with formal services over issues such as guardianship: 

“At the end of the day, when Sophie was born, she was a week old when we were told she had downs syndrome. The consultant said to us at the time, and I’ll never forget the advice he gave to us was: ‘you will need to fight so much for your daughter. You will need to fight every day for different stuff,’ and that man has never spoken a truer word.” 

Family 1 

“Speaking to other parents we were advised to start early [with guardianship] as it takes a long time, and you could be left not having a say in your child’s welfare or medical stuff. So, we contacted a local solicitor and they said they had two people that do that sort of thing, so we started it early in March 2020 (about ten months before Sophie turned 16 He said we would need welfare, financial and property powers so we proceeded then. Our social worker and the public guardian questioned why we needed financial and property powers but that’s what he recommended.” Family 1 

Wider challenges of raising a disabled or seriously ill child or young person on a low income 

Theme 1: Peer support 

An important theme was the value of shared, peer support: 

“…I find it really good to just to speak to other mums, to share experiences and things with them. So, it’s really good to have other mums to chat too. And there’s a mum to set up a Facebook page here in [locality] because her young child’s just been diagnosed or in the process, and she doesn’t really know where to go for help. You can learn a lot just from speaking to their moms. I think that is someone to talk to, you know? So, you know, you’re not, you know, on your own, you know.” Family 4 

The above quote also emphasised reaching out on social media, as one way of tackling isolation. This family described the value of a shared understanding of their experiences: 

“Like this lady I work with. I worked with for a long time. And she’s got three sons. Two are autistic. And her sons are all grown up now. So, you could speak to her. And she says, you know, nobody really understands. And they, they have to live with it.” Family 4 

 This was mirrored in the Family Poll comments. A theme to emerge from a number of responses was the value of informal support, either from families or the wider community, especially as a consequence of the cost-of-living crisis: 

“Relying on family” 

“Borrowing more money from family” 

“shopping has been the worst. I’m disabled so my middle son takes me” 

“Having to spend free days accessing local resources (community centre, library, pantry) for activities/food” 

However, other families noted situations where informal support was not available: 

“My family live too far away” 

In one instance, a family said why they needed external support: 

“My children have never been away from me or my partner, and don’t cope well with change. We don’t have family to help.” 

Theme 2: Support from services 

Families valued support when it was available. A key marker of effective support was all members of the family having a voice in how support was enabled and facilitated: 

“Sophie is a very visual communicator, she works with paint boards, signing skills, she gets asked, the social worker and stuff like that. But really, we are her voice. But as far as school, social worker, adult services, I’m very much included.” Family 1 

Findings from Family Poll show how support from a range of services was crucial for so many families: 

Findings from Family Poll show how support from a range of services was crucial for so many families: 

Positive wider support 

Some families identified positive experiences of wider support: 

“Barnardo’s young careers have provided family activities that gives us something to look forward to” 

“Without support energy companies, and other payments, I don’t think we could have coped” 

“My son has started at new additional learning support school in September 2022 and the head mistress is wonderful and the school is very community spirit and take the children out on regular trip. Ethan* has benefited so much from this” 

Lack of support 

Other families described a lack of support in terms of wider agencies either not understanding their needs, or not implementing support where needs have been identified: 

“We are just worried about our son’s schooling and the stress it’s causing him due to the lack of Additional Support Needs Teachers and Specialists. Every Service seems to have been cut and that, coupled with the fear of rising bills, is making life very tough” 

“It has been a challenge as I don’t have any support with my son’s disability” 

“Losing our home. It is private rent and over the benefit cap set by council. We had to move in 2nd lockdown as previous landlord was selling up. He became aggressive as I wasn’t trying hard enough to find another place to stay. Council refused to support us until we were physically homeless.

I was trying to keep home life calm for my daughter with autism. There were only 2 homes available. I was accepted for this one. It’s draughty and no carpets downstairs. The rent has increased now. Benefits reduced after 2nd lockdown.

Council failed to meet deadlines of appealing for benefit. Council said they help with removal costs, but they missed the 28 day to decide in application. In fact it was 60 days. Then declined the application as I already moved home. I had to take high interest loan out 18 months ago to pay removals. I’m worried about being made homeless and my daughter going into a depression as she previously did when forced to move.”  

“No school. No support. No education, falling behind and having no future.” 

“Carers service support worker gone on sick and nobody to support me.” 

“Having reduced my hours due to lack of childcare and now not being able to afford bills.” 

Waiting for support 

A further theme was the impact of waiting times and waiting lists to access support: 

“It’s hard going and especially waiting on appointments and there all a couple of year behind and struggling to get the kids the help they need” 

“Waiting for social work to approve package” 

“still waiting on social work to make an assessment after 2 and a half years of waiting” 

“I apply for a social worker for the past 3 years but nothing available for him at the moment” 

“How my son who is currently 9 is only going to get bigger and stronger and every professional app we go to its just waiting list, waiting list” 

“Counselling has a 20 + week waiting list.” 

Rationed support 

Families also expressed their experiences of support in terms of its limited availability: 

“Services withdrawn in the area.” 

“Social work budgets are very limited. My eldest son finished education locally at 12 as there are no specialist placements where we live. His social work care budget is 14 hours per week. This does not include transport to and from his placement. Every other hour of the week is down to me to provide and pay for.” 

Maintaining consistent support 

A family identified a challenge with sustaining consistent formal support: 

“Social workers change frequently, making it difficult to keep consistency.” 

Getting information 

Some families described difficulties with getting information: 

“It’s difficult getting information as it’s not all in one place.” 

“The council never provide info on grants or charity support and refuse to work with local charities with Scottish Gov funding.” 

Other families described how they were seeking advice, especially in relation to financial support and dealing with debts: 

“We are speaking to a money advisor and reducing as much energy use as we can. Buying shop brands and frozen, instead of fresh food” 

“Seeking debt advice through a local support group” 

Engaging with wider support 

One theme to emerge from families’ responses was the extent to which their children felt comfortable in the company of others, which limits the potential for wider support: 

“My child won’t settle with anyone.” 

“Child won’t engage.” 

Families also noted that the wider social context needs to recognise the needs of disabled young people: 

“I can’t opt for the normal. I have two very special boys who need, not want, need things done in a certain way.” 

“Lack of understanding of my child’s needs” 

“Supporting my daughter in education, finding the right high school.” 

One family noted the need for support for wellbeing and mental health: 

“I can manage the care of my son. It’s demanding and draining at times but I would like more help mentally for my child and to help figure out his thoughts and feelings and way forward to his future.” 

Applying for support 

One family noted difficulties with making applications for support and the level of information available to help inform the process: 

“Price of fuel, gas, and electricity. I was unsuccessful for the warm home discount this year with no reason why. My energy supplier is [energy company]. Very disappointed and worried.” 

Housing 

Many families highlighted the wider context of their home as having a key impact on wellbeing and their ability to support their children: 

“Our house has dampness and landlord gave us a dehumidifier which cost a lot to run, and it is really bad in the winter. So I have to move my daughter out her room as this is the worst room in the house, and myself and my partner sleep in the living room.” 

“Fixing things that my child has broken and a leak in the roof that the insurance won’t cover.” 

“I can’t afford to run the things I really need in my house to keep the dampness away.” 

“It’s been stressing me out, my home is black mould all over, soaking windows walls and have been putting heating on and it’s costing loads but we need it, kids haven’t been in school since lockdown.” 

Experiences of education: 

“My son tends to injure himself a lot of school and sometimes results in getting sent home or sent to hospital.” 

“Hospital appointments, hospital overnight stays” 

“Many appointments to attend.” 

“My twin girls don’t sleep well, can be awake 22hrs a day resulting in them being exhausted.” 

“Anxiety and having shorter days to settle him.” 

“No council budgets to provide support in education. 15 ASN pupils in school, 2 ASN pupils whose parents work as teacher and social worker for the same council receive full support.” 

“My daughter has no educational support and is therefore out of school( 3yrs). There is no budget to provide her an education.” 

Two families noted the impact of bullying: 

“School bullying” Head teacher in the only local secondary school in the area denies bullying and attendance issues” 

This family also emphasised how crucial access to respite was: 

“Support for respite is really crucial for our mental health.. To give my wife a break, because she does all my daughter’s personal care, all that kind of stuff. Sophie gets key visits to [respite service]. And even that couple of hours in between school and bedtime is… and when she goes overnight on Thursday nights, and we get a bit of peace, get to the shop.” Family 1 

 Again, this was mirrored in our Family Poll 

The following quotes also express the need for respite in order to embrace the wider caring experiences of an entire family: 

“How to get a social worker for my boy, so that we can access respite. Which gives me more time with my other children.” 

“Myself, my partner and my twin 10-year-old girls are absolutely exhausted. We haven’t had a holiday in over eight years, can’t go out for dinner as he will kick off and start flinging plates etc around, we get to do absolutely nothing together as a couple or with the girls as we always have Jack. Not one bit of respite or help do we get- this affects not only ours but our daughters mental health also.” 

Other families also highlighted the need for time for themselves: 

“I’m decreasing the amount I eat to allow my children to eat all the time, I also rarely take time for myself to make sure they can take part in activities and festivities.” 

Theme 3: Trusted individuals 

Effective support was also couched in terms of the relationship that was often built up between families and trusted individuals, who came in for specific praise: 

“People looking after her during that time are brilliant. You’re always worried she has no sense of danger, but you know that the people there will look after her. It gives confidence of what they provide there.” Family 1 

“We’ve had the most amazing speech and language therapist. They moved here seven years ago, and she’s been a huge, huge help… we’ve learned so much and we’ve got strategies that help. And we’ve got a really good strategy that helps Ethan because he’s really quite disfluent in his speech.” Family 4 

“When I think of support I think of [their teacher] because she’s like an angel! She’s the one who gave consistency to both my boys because they were in a support class. Both had her, and she’s been there with information and help., She’s who I think of when I think of support.” Family 2 

Theme 4: Consistent support 

As highlighted in the quote above, support that was also valued was consistency over time: 

“And I worry. He loves school. He loves everyone who works with him. As a parent you wish you could take all of the people who have worked with him all these years and just stay with him for life?’” Family 2 

Theme 5: Structural problems 

Whilst families often had strong praise for individual members of staff, they also emphasised gaps in support because of wider structural issues, such as cuts in services, as well as the impact of COVID: 

“When Liam was wee the school [had] a language unit. And Liam went there because he had huge problems with speech, with his fluency. And he just couldn’t talk at three years old at all. Hardly had any words. And they were amazing. But with cutbacks they got rid of language units. Ethan has the same kind of issues with speech and language, but he hasn’t had the same support with that because they had [to make] cutbacks.” Family 4 

“I’ve just had Ethan’s school on the phone the other day because he’s really struggling in school. And what more can they do to support him? He’s been referred to the OT because he struggles with his fine motor skills. He got a lot of help before COVID. Ethan never had that help. He was referred, but it was COVID time, so nothing ever came of it.” Family 4 

Turnover of staff and gaps until vacancies are filled: 

“The social worker that we had, left. Basically, we have been left high and dry for months and months without social workers and bearing in mind we have the transition from children’s to adult [services], and now we have the transition from school to lifestyles, this is without a social worker to guide us down the road.” Family 1 

Service capacity 

Families discussed the capacity of services to meet demand. In one instance this related to the need for access to more frequent respite than was available: 

“You just have to put up with it. I do get stressed. Take five minutes, dust yourself off, you know. I feel bad because my other two children don’t get me as much because I have to spend so much of my time keeping him safe. I feel they get pushed to one side a wee bit. It would be nice if [third sector respite service] could have more staff… the service is there but there’s not enough staff.” Family 2 

Theme 6: Advocating for services 

A couple of the families described having to go an extra step to get the needs of their child recognised, or pushing for services or benefits to which they were entitled. One family described getting advice and having to go through an appeal process: 

“When we were applying for DLA* we found that to be an absolute nightmare. The form filling was absolutely crazy. Every time we’ve done that we’ve had to go to citizen’s advice and get them to help us. And every time we’ve had to go to appeal and I 

personally found it personally really really hard. The person supporting us could speak. I was allowed in the room, but I was not allowed to say a word.” Family 1 

*Disability Living Allowance, now been replaced with Child Disability Payment 

Information

Another family described arranging meetings with services to advocate for their child: 

“We also asked our council for respite support, but because he had a diagnosis of autism, he didn’t really fit into the disabilities team, so he didn’t qualify for the respite. So, I’ve had to write letters. I went to the head of education, head of social work team, to say does he not have a learning disability as well as autism? So, they did take him into the respite service, but if I hadn’t…” Family 3 

This family went on to describe having to cite government policy in order to advocate for their child with local services: 

“I was doing a degree at the time and that helped. We did quite a lot of the different policies of the Scottish Government. Getting it right for each child. Looking at the child, not at the label. Because autism is so wide, such a broad diagnosis. It can be completely different at each end of the spectrum, so need to look at the child, not just the diagnosis.” Family 3 

Theme 7: Making every communication count 

Families emphasised how important informal networks of support were, either peer to peer support, or within families, or across friendship groups. Nevertheless, the potential for isolation and loneliness were also discussed. For one family, effective formal support was couched in terms of maximising every opportunity for contact with services, and especially for making information available and signposting to other help: 

“[It was] initial diagnoses and just ‘off you go.’ I think a lot of people would maybe say the same. And just reassurance that it’s not the worst thing ever. And that you’re not on your own. Unless you’ve got friends and family, people can end up very lonely. Very lonely. If you 

don’t have the support that can tell you what services available, what things you can get access to, unless you find it yourself you might not get much access.” Family 3 

Linked with the issue of potential isolation was the reticence that some people may feel about reaching out for support: 

“I would say don’t wait so long to ask for help. There is help out there if you’re struggling a bit. There is help out there. And I know I’m not being judged, but I was judging myself. And I didn’t need to and getting that message out in the nicest possible way.” Family 2 

Theme 8: Awareness and empathy across communities 

One family discussed feeling there was sometimes a lack of understanding of specific additional support for learning needs and conditions in key services, and the impact that this lack of awareness had on a child or young person. Family 4 discussed their son, Liam’s experience of school: 

Parent: “Liam would struggle with his emotions, and they would get very overwhelming for him, and [older brother] has no emotions, completely the opposite.” 

Liam: “And whenever I get sad or anything they just go ‘stop it, you’re not a baby.’ There is no empathy whatsoever.” 

Parent: “No empathy.” 

Liam: “No there isn’t. They’d go -you’re in secondary school now, stop being a baby.” 

Families also discussed the wider context of the level of understanding and awareness of disabilities and conditions in society at large, whether amongst peers in settings such as schools or just out and about: 

“I think just understanding still would be good, just from difficult people. Who don’t quite get that there’s different learning and teaching levels..” Family 2 

“He was really not very well. He was bullied really badly at school. So, I made the decision then to take him out of school.” Family 4 

This family also went on to reflect more broadly about their experiences in wider society: 

“You just need to have an understanding and you’re supposed to live in a world where people accept all these different diversities in different people. But 

sometimes that’s not easy They just don’t understand.” Family 4 

Effective support could involve a stronger focus on awareness raising across society, to enable greater equity in the experiences of families with disabled or seriously ill children. What was striking about families’ responses were the references to key individuals in the media. 

 This also emerged in Family Poll with families concerned about feeling isolated and overwhelmed. 

An important theme underpinning many families’ experiences of caring is the cost-of-living crisis, which not only practically impacts on the capacity of families to provide the level of care they need to, but also impacts on their wellbeing and mental health. Families also said they feel under pressure or overwhelmed: 

“My child’s mental health is my main concern at the moment.” 

“My non-disabled child’s mental health, being stuck in between two siblings with disabilities.” 

“Too much stress.” 

“Low mood and high anxiety.” 

“I am struggling with my mental health which affects my family.” 

“Myself and my husband are more stressed on trying to make the money go further.” 

“Pressure to make sure we can continue to afford all our household bills as wells as travelling expenses to and from hospital.” 

“The cost of everything- our mortgage is up £140 per month in the space of 12 months, petrol is a rip off, gas and electric were probably paying double and sometimes freezing in the house but don’t want to put heating on as we’re tight for money it’s really quite obscene.” 

“My husband and I are terrified of the energy price hikes to come. Both our son and myself are physically disabled and spend most of our time at home and we need to stay warm.” 

One theme to emerge from families was the extent to which their experiences of caring was framed by feeling isolated: 

“Very lonely recently, especially in the winter months.” 

“I feel stressed and lonely.” 

“We are lonely and isolated. We are cold in our own home.  I feel I’ve failed my daughter. My daughter rarely leaves her bed to keep warm. We are arguing as she wants heating on at all times.  Just now it’s snowing.” 

“It’s very challenging, especially a single parent. No help somewhere else. I feel left out.” 

“I feel the world’s a dark place at the moment, as much as I manage well I tend to withdraw from people to concentrate on my son and other siblings when they visit.” 

A family noted the potential for isolation arising from the costs of living increases and travel issues: 

“Rising costs and not being able to provide any extra experiences for my children. Activities for them tend to be so much more expensive and we have to travel further. I am worried this impacts their social development and mental health as they will become isolated.” 

Theme 9: Awareness raising in the media 

A couple of the families noted the value of recent TV programmes, or books, not only in raising awareness of neurodiversity, but also in providing support in terms of practical guidance: 

“Having watched a BBC programme lately I realised that there are a lot more of things than I knew about. Its’ just that kind of information.” 

“On Chris Packham we saw that different children were using different devices I didn’t even know it existed.” Family 3 

Another family also highlighted TV as a way for their children to connect with other’s experiences: 

“Like we were watching the Chris Packham programme. And one of the things on it was the girl’s school and they said the teachers don’t understand them. And that’s what Liam said when he watched that. He says the teachers don’t really understand me. and [he] dislikes it. He struggles with numbers, so learning is really, really hard. And he struggles with his emotions, and he gets upset easily. And then the teachers would hassle him for that.” Family 4 

This family also suggested the potential value of books as a way to share experiences and understanding with their child, although she had struggled to find anything in their public library that might help: 

“There’s a new book come out, Paddy McGuinness’s wife’s written, because she’s autistic. And I’ve ordered that. Explaining to your child. Sometimes it’s really quite hard [to say] what it’s like when you’re autistic so they understand it.” Family 4 

Planning effective support and transitions in remote communities 

Families were asked to reflect on their experiences of raising their children in remote communities. 

Theme 1: Availability of supported housing 

Families commented on the lack of supported housing options available, reflected in long waiting lists: 

“There’s nothing there at the moment that would suit her. But there could be one in 2 months, 6 months, a year, two years…But like anything else, housing is like hens’ teeth.” Family 1 

“We’ve been on the waiting list for a house. Lewis has been on that list for I don’t know how long. But that would be quite beneficial because he is getting older. His needs are getting trickier.” Family 2 

Theme 2: Lack of alternatives 

A family commented on the limited alternatives available if there is a breakdown with a key service. A young person and their parent discussed his experience of school: 

Liam: “It was [Dyscalculia]. I can’t say it right, but I find numbers really difficult. I can’t do anything with maths or anything with numbers in it”. 

“It’s just like he finds learning really, really hard with them in the main classroom. But there’s not much else here in [locality] A lot of kids with autism would hang about the guidance corridor but he refused to do that. He wanted to go to class.” 

“There are supposed to be support teachers. But because of all the cutbacks, I don’t think they don’t have the staff. I don’t think that’s right.” 

Liam: “No, no, they do have help in the classrooms, but not for me..” 

“He just never moves fast, and you he struggled with writing. So, we bought an iPad. Yeah. But then the teacher tried to make him write and he finds that really hard” Family 4 

“It’s tricky when we’re in such a small community. There’s not a huge amount of children similar. So, it’s very specific with the support that he needs. In that smaller community you’re very much a minority. And maybe you don’t have access to the same services as a charity we are very new. We don’t have the same experiences that other charities have, maybe more awareness of things.” Family 3 

Theme 3: Distances to essential services 

A family described the difficulties of taking the time out to travel to the nearest hospital for a scan, which needed flights organising and two days off work: 

“Everything has to be planned out. With medical appointments as well. Which for myself meant I had to take two days off work. Because if it was a medical appt for myself, I would get paid, but because it was my daughter, I don’t get paid.” Family 1 

The above quote also highlights the difficulties of juggling work and care. This point reinforces the importance of access to respite care, given the pressure on working parents and carers to use annual leave to cover care and support needs. 

Theme 4: Linking up with services online for support. 

One family discussed linking online with services on the mainland, as a way of getting round access to specific support: 

“I spend a lot of time looking at things online and I did see that the National Autistic Society, have courses like EarlyBird. But on the island, we don’t have the same resources that they do on the mainland. And I have found a school in Inverness, and they were really good and let me join their online things and courses. But without that, there’s nothing here.” Family 3 

This family went on to describe an online meeting which ended up as bespoke one to one support: 

“One of the courses was with someone else who didn’t turn up. And it was with an autism practitioner. We did the course and there were just things I had never heard of before. Things that help with sleep. Things, experiences they could relate to, things that had never really been explained to you. I had never even heard of that before.” Family 3 

Theme 5: Positive aspects of remote communities 

Families also commented on positive aspects of their current location. 

“I actually think it’s better. Just because everything is a bit smaller and quieter here. I couldn’t move back to Inverness because I just feel like there’d be more people. They’d be more stretched – there’d be more people, services would be more stretched. Whereas here it’s calm and you generally get things done quite quickly.” Family 2 

“Being in a big city, doing all that stuff, I just would hate it. I’m not. I’m not moving. I don’t mind moving to anywhere, here.” Liam, Family 4 

Conclusions and recommendations 

Families valued informal support within their own family, across friendship groups, and between peers. A role for policy might include enabling and facilitating peer to peer support either within local communities or nationally across Scotland, in communities by experience. 

There was praise for effective local services and staff. Things that were identified as making a service work were trusted professionals and consistent relationships, with the child and parents/carers feeling listened to and included. Vital specific types of support were highlighted, such as respite or flexibility from employers. 

Barriers to effective support by formal services tended to be structural issues, such as availability in a local area or staffing challenges in local services, particularly turnover and filling vacancies. Families also described the challenge of overcoming a gatekeeping mentality in some services, with a level of persistence and resilience required of families to obtain services they were already entitled to. 

In very remote areas, the availability of specialist services, the distance to essential services and the lack of alternatives, if a particular local service was not available, were barriers. To a certain extent online services could mitigate some disadvantages of living in a remote area but were not always suitable or considered to be of a high enough quality. 

The transition to adulthood was a time of tension and uncertainty for many families. Not all children’s services were matched with a similar adult service. Parents and carers reported having to take on an increasing role in advocating for, and coordinating, their children’s support. Transitioning to adulthood also led to the emergence of issues which hadn’t been seen during childhood. Legal matters such as guardianship and the need for stable secure housing options emerged. Structural challenges with accessing these services added tension to family’s experiences. 

Beyond their caring role, parents and carers felt that they, and their children, experienced challenges from wider society, such as discrimination, intolerance, and a lack of awareness of their needs. Recent media stories exploring life for young disabled people seriously ill people was valued by families to raise awareness of their family lives.