Introduction

Youth and disability are heterogenous concepts. Not only one youth or only one disability exists, let alone only one type of youth with disability or high support needs (HSN), which is our case1. The transition from infancy to adulthood directly affects how someone conceives the world, their needs, and their quality of life (QoL) and that of their family. It is here where social services play a fundamental role1,2. Thus, it is worth firstly dealing with these concepts and the cover that social services offer to meet their needs.

Delimitation of disability, as a social construct, varies according to the affected function, its time of origin, its severity or the historical context3,4,5,6. In the 2000s different models emerged including the biopsycho-social model7 and the model of rights, while the latter, consolidated through the Convention on the Rights of Persons with Disabilities (CRPD), foregrounds dignity, autonomy, and equality of opportunity.

From this perspective, disability situation is not only a question of individual impairment but a relational and contextual condition. Needs evolve through the life course and intersect with domains such as education, employment, housing, and community life. This context becomes more important when it is understood as a facilitator, or not, of social inclusion, and even more so if it deals with people with HSN, where families play a relevant role in their care and accessing inclusion possibilities. Thus, it is worth adopting a cross-cutting perspective that encompasses their life cycle in the intervention from the public and social spheres8,9,10,11.

Specifically, in Spain, a person with HSN is qualified by two overlapping legal-administrative frameworks: disability and dependency. Disability, results from ‘the interaction between persons with foreseeable permanent impairments and the barriers that prevent their full and effective participation in society’ (art. 2 RLD 1/2013). It is assessed by a scale (0-100%) based on medical, psychological and social criteria (< 33% is insufficient to obtain official disability status; >50% is severe disability; and, >96% is very severe disability).

However, disability alone does not always guarantee access to services. This is where the legal concept of dependency becomes crucial. Dependency is the ‘permanent condition of a person who, for reasons of age, illness or disability, needs substantial help to carry out basic activities of daily living’ (e.g., personal hygiene, food, clothing, etc.). Three levels of dependency are distinguished: grade 1 (moderate), grade 2 (severe) and grade 3 (high). Depending on that degree, certain resources are granted which are sometimes incompatible with each other (Appendix 1). Therefore, a person with HSN is usually someone with a degree of dependency 2 or 3 and/or a degree of disability of more than 49%.

Moreover, the role of the family is essential in this context, where informal care remains dominant, acting as key mediators in access to rights and services12. This caregiving role is increasingly pressured by demographic shifts, including the ageing of caregivers and of the people they support, and broader socio-economic changes such as the feminisation of the labour market13. This creates the need to interconnect official support services (i.e.: social services) and non-official support networks (family or friends).

To address these emerging complexities and driven by the disability field, and other fields such as the elderly, the System of Care for Dependency and Personal Autonomy (SCDPA)14, was implemented in Spain. It includes resources to care for people with HSN (e.g., residences, day centres, telecare or services for the promotion of personal autonomy). Yet, the SCDPA portfolio of services makes no clear differentiation among services, which occurs with other specific social services intended for groups; e.g., youths, infants or the elderly14,15. As a result, the resources and services included are subject to many complaints about the inclusion and promotion of the personal autonomy they offer16,17,18,19,20.

Furthermore, the decentralised organisation of Spain’s welfare system has led to 17 autonomous and uneven models of implementation, which generate fragmented access and regional disparities16,17. Consequently, there are risks associated with the characteristics and implementation of each territory, especially in those more depopulated such as Aragn, Asturias or Extremadura, because in municipalities with less than 20,000 inhabitants it is not mandatory to offer social services resources21,22. To all this, we need to add some detected risk factors, such as living in a rural setting, being a migrant, a woman or, as in our case, a youth with considerable support needs1,20,23,24,25. In other words, an intersectional perspective must be maintained that combines several factors to increase discrimination and/or already existing difficulties26.

Therefore, the following questions arise: How do young people with HSN and their families perceive their quality of life? How does the role of social services affect their quality of life? What changes or improvements are necessary to improve their attention and inclusion?

Attending to these questions, our general objective is to explore the experiences of youth with HSN in social services in Aragón (Spain). This objective is specified to:

  1. 1.

    To identify the main demands and needs of youth with HSN and their families.

  2. 2.

    To learn about experiences in the Aragonese social services of youth with HSN and their families.

  3. 3.

    To propose improvements in the social services intervention.

Methods

Research design

This study forms part of a larger research project on the needs of youth with HSN in the social services in Aragón (Spain). The choice of method for conducting our research focused on gaining an expanded and personal understanding of the experiences of young people and their families. In this regard, we adopted a qualitative design, grounded in reflexive thematic analysis (RTA)27,28,29. According to our aims and from an intersectional perspective, a semi-structured interview was conducted to investigate youth with HSN and their families’ experiences in SCDPA by attending to the diversity of people and their specific needs. Questions were linked with: (1) socio-demographic data and the resources that SCDPA provides; (2) youth with HSN and their family’s experiences based on QoL questionnaires and interviews8,30,31,32 and social services quality questionnaires and indicators 33,34,35; (3) their satisfaction, perceptions, feelings and needs30,32. The collected data were analysed by a thematic reflexive analysis27,28,29.

Study participants

Given the characteristics of RTA27,28,29, in this section participants are understood as both the interviewees and the research team itself and the relationship between them. Thus, this section is divided into three subsections to allow for a greater contextualisation and understanding of the data collection and analysis process.

Researcher description

The person who conducted the interview is a social worker with 13 years’ experience, has a background in working with individuals with HSN and their families, including collaborations in the long-term-care field and youth services.

Participants

In Aragón (Spain) according to the data provided by Aragonese Institute of Social Services (IASS), on 28 February 2022 there were 1,574 youths with disabilities and a recognised degree of dependency aged 13–30 years. Our research included 12 youths, 12 relatives and one legal career professional from diverse backgrounds representing over 1.6% of the target population in rural and urban areas (see Table 1).

Table 1 Characteristics of the sample interviewed on social resources and services.
Full size table

Researcher-participant relationship

The first author conducted all the interviews and had no relationship with any of the participants.

Participant recruitment

In Aragón, youths with HSN receive care through various social entities: rehabilitation programmes, schools, day centres or residential centres. We connected with the main hub in Aragón and Spain, which unites most of these entities. Through the Committee of Entities Representing People with Disabilities (CERMI), we reached out to families and youths with HSN, and ensured representation from rural and urban areas across all the three provinces in Aragón (Spain). We included families as informants for the young people unable to participate due to their HSN. These family relatives, who act as legal representatives, relatives or primary caregivers, possess in-depth knowledge of youths’ circumstances and can advocate their interests. In this regard, following previous examples36,37, family members acted as vital proxies, responding on behalf young participants. For example, among other things, they helped us rephrase questions, helped the young people complete their sentences, or told us stories and background information they had experienced with the participant. When possible, these responses were confirmed by the young people through non-verbal cues (e.g. blinking or nodding their head or leg). Thereby, we tried to avoid the “risk of potential bias imposed by the proxies’ perspectives because the information has not been directly collected from the individuals with cognitive disability”[36, p. 10].

Ethical clearance and considerations

The University of Zaragoza and the Research Ethics Committee of the Aragón (CEICA) approved the project and its instruments from an ethical point of view, in their resolution number C.I. PI22/198. At the beginning of the interview, participants were informed of the purpose of the study and the use that would be made of their answers, and signed informed consent forms, either orally or in writing, before the interview. As the study involved human participants, we conducted the research in accordance with the Declaration of Helsinki. No participants received financial compensation for their collaboration in the study.

Data collection

After contacting interested youths, relatives, representatives or caregivers, we provided an accessible information document in their language and an easy-to-read version. After the interviewer had verified their understanding, participants gave written and/or verbal consent before the one-on-one interviews. On average, the resulting 25 interviews lasted 52.4 min (from 24 to 103 min). The longest interviews were with family relatives, and the shortest were with the individuals with intellectual disabilities or developmental disorders due to their specific needs. Meetings took place in locations chosen for accessibility reasons. The first author recorded and transcribed the interviews verbatim.

Analysis

Data analysis strategies

Interviews were analysed by an RTA, following the process of familiarisation, coding, generating initial themes, reviewing and developing themes, refining, defining, naming themes, and writing up27,28,29. The literature provided the initial lens through which we approached our analysis by offering a deductive approach, which was meaningful to the research questions. An inductive, ‘open-coded’ method was adopted to represent participants’ meanings. Each interview was (re)read and coded by the first author using the MaxQda 2022 software. This process involved assigning a phrase or paragraph to a unit of meaning. It focused on the explicit data level. As broad patterns were identified (within and across data), themes were developed from these codes. During an iterative and refinement process, the research team met to discuss themes and subthemes to capture data richness and to preserve valuable nuances, rather than seeking a single ‘correct’ set of themes.

Methodological integrity

Our research adheres to methodological integrity, reporting standards38,39 and RTA criteria29. It offered a flexible approach to distill the data that were underpinned and unified by a central idea29. It also placed an emphasis on researchers’ interpretive lens by allowing us to capture the intricate and diverse interactions between youth with HSN experiences and needs (e.g., including those in rural settings, women, with multiple disabilities or migrants) and the interventions of social services. All this aimed to improve their care and inclusion.

Due to the qualitative method’s characteristics, we managed our researchers’ perspectives38. The first author’s experience with youth with HSN, particularly those with intellectual or multiple disabilities and communication challenges, led us to adapt our approach to people with cognitive disabilities, but who can orally communicate. We tailored questions for diverse scenarios (e.g., migration), and adjusted response formats for individuals with communication challenges, but intact cognitive abilities, using closed responses like blinking for agreement.

We recognise some limitations due to the data protection regulations that govern health, disabilities and special educational needs, which restrict access to the study population. Given our qualitative approach and the focus on understanding this population, our findings are specific to the studied subpopulation and are not generalisable to all youth with multiple disabilities in Aragón’s settings40.

Results

From our findings, several themes and subthemes were identified in relation to the experiences of those interviewed, and were extended during the analysis and iteration process. For instance, on the three initially reported themes (QoL, family QoL, social services), the intersectionality question and its subthemes (rural setting, pluridisability, migration, etc.) were incorporated. Within these themes, subthemes were identified, which helped to understand them (e.g.: QoL aspects, intra-/extra-family relationships, positive/negatives experiences, proceedings/ bureaucracy, gaps, etc.). All the themes and subthemes are summarised in a table (see Appendix 2), and were analysed and related in-depth throughout this section by also using relevant data extracts.

Family quality of life

As caregivers’ circumstances (marital status, health, geographical proximity, etc.) can impact QoL and needs, we considered it necessary to examine their experience in relation to the subthemes (the family QoL theme) of: conciliation; caregivers’ status; family relationships; attending to these specific matters. In cases where the parents were divorced, participants made fewer references to caregiver burden and to difficulties in maintaining extrafamilial relationships (e.g., leisure activities with friends). They reported improved work–life balance, as the distribution of caregiving responsibilities within this new family arrangement had become more equitable, following a court-mandated order. This was why they shared more time with them.

You know?, in the end a divorce is a blessing because the lad is with his father for half a month and half with me. We have the other half month for our own free time, and this relief comes from the family itself (Reporter 16).

On this matter, it is also important to stress the references made by supervised people because, in their case, social services perform support tasks for vital decision making about their development. So, it was striking that when the subthemes of the social services theme were analysed, some like these people’s involvement, participation or access to supplementary resources appeared to a lesser extent. The difference between being supervised by a private social entity or social services, and relying on a foster family or not, was specifically referred to. Private entities had a lower professional/persons ratio to care for and can, therefore, pay more personalised attention.

They have been good with us. We have thanked them a lot (…), when they come, they tell you what you can do, what you cannot do, with the money they have, with your rights. It might be due to the money I have. I don’t look at that at all; let them administer my payment… (Reporter 6).

Well, yes, I´m pleased with family. It seemed a bit odd at first. I took a long time getting used to it, talking to them and always took the same position (head down) while they encouraged me. But now it’s as though I trust them more, I tell them things…Sometimes we clash (…) because they don’t let me spend much time alone (Reporter 21).

Regarding the resources offered by social services (see Appendix 1), for those cases with the FC resource, the importance of family support is stressed, as is having a stronger effect on family QoL and caregivers’ status. They refer, on the one hand, to the need to supplement help for those cases of outbreaks, aggravation and unexpected situations for the main caregivers and, on the other hand, to insufficient quantity. The impact of COVID-19 was highlighted as being less because people in their resource entity did seem affected by confinement. Frequently, issues linked with interadministration subthemes and gaps created by changes in resources were minimised because they did not have to change the resources that occurs when reaching the age of 21.

Because we [our family] work as a team, we all coordinate to move forward. However, it’s possible that I can’t actively participate with outbreaks … my dependency increases and receiving home service could also help you (Reporter 3).

Quality of life (QoL)

On the “QoL” theme, the responses given by people living in a care home reflect a reduction in its emotional, material and self-determination aspects. Working with social skills, adapting to the population and being in contact with family relatives are challenges associated with a higher deinstitutionalisation demand. One point stressed by the families of these youths referred more to experiencing blame and fear about this decision, which affects caregivers’ status. All this is linked with care homes being places where there are only people with HSN and, therefore, less inclusion, which affects their relationships. There is also the profile of the sample in care homes, who mostly have behavioural and oral communication problems.

Here, well…Yes, some people have been institutionalised all their lives. So, they mix with just one person because it’s more convenient for them. They feel afraid, so there are roles, positions, aren’t there? (…) I think that promoting deinstitutionalization, and support (…) more resources for flats in the community (Reporter 9).

It affects me considerably. I keep thinking if he’s all right, or if he isn’t. If what I would do for him is all right, or if I do more that I should, and how they treat him; here better communication with families is necessary. (…) We need something more personalised, as if I could talk to my son every day and ask him about his day (Reporter 12).

All those interviewed questioned the integration of individuals of different ages and with varying degrees of dependency in both care homes and DCs (resource subtheme).

Nowadays, I don’t know if there’s a centre, or not, that meets the characteristics needed to attend young people like  *anonymized*. There are two extremes: attending children or attending the elderly. (…). This means that there are no leisure activities; they only bath people and prepare food. (Reporter 1).

Despite being a more inclusive alternative to institutionalisation in care homes compatible with caregivers’ conciliation, the DC resource poses several problems with this subtheme. It increases costs (bus, dining room, physiotherapy, etc.) and makes conciliation difficult because of its limited timetable (not including evenings, holidays, weekends) and medical visits. This is further compounded by the fact that primary caregivers are usually family members who, due to the demands of care outside the DC’s opening hours, are unable to take up paid employment. However, they do not benefit from this role, as their caregiving work is not recognised through contributions to the Social Security system.

But my son has many needs at weekends, during holidays, when on holiday, in August, etc., (…) When he’s with me for 2 weeks, I´m worn out because I also go to work. I think they should offer a service to help these people, to help them when they’re at home (Reporter 5).

I don’t think the change was at all brusque for her. She’s always content. The same goes for us. It was actually better for us. (…) They bring her home in the evening because they take her in the morning. They bring her home at 6 pm, which is very good (Reporter10).

Social services

Finally, in relation to the interadministration subtheme and its relevance for disability renewals, recognising rights/resources/services, changes linked with dropping out of the education system, etc., the bureaucracy and the institutional and organisational complexity of the Spanish system were reflected as problematic.

The first resource we need is that the things (data) they have, they being society, the administration, the police, the Aragonese Regional Government, the City Council, the healthcare service, they should get them off one another. They ask us “do you authorise access to the database?” When they have shown interest in whether we have paid or not, medicines in chemists, they have contacted those from Inland Revenue to know what we all earn (…) As they showed interest in that, they should do the same for everything else (Reporter 2).

The same rule changes depending on the region you are in. So, of course, dependency, social services, mobility and all that is referred. So, you must ask if you’re still entitled in the city you visit (Reporter 4).

21 years gap

When looking at this matter in more depth, we initially considered the change that quite often occurs when shifting from an FC resource and a school to a dependency resource at the age of 21, which we call the 21 years gap (see incompatibilities in FC and DC in Appendix 1). Throughout this research work, several families mention that they consider this time to be a gap:

We had to wait a long time before they gave us a place in the centre. (…) It took just over a year (…) I was bored at home. (…) I felt bad that year. (Reporter 4).

Some request a place in April or May, but get a place in February the next year, or in December. They have behavioural problems, and if they have no routine… We´ve seen this with some at school; for example: a father was a hospital nurse. He and his wife separated. He had to change job. (…) Now his life has changed and he can’t go back (Reporter 1).

18 years gap

However, they identified another critical gap at the age of 18, when the disability certificate must be renewed and legal adulthood is reached—an age at which full legal capacity cannot always be exercised. Families noted that this stage involves making decisions and undertaking administrative procedures that can be particularly challenging due to the considerable time they often require.

We depend on certain documents like the disabled or dependency certificate, which some organisations request to do other proceedings. When he reached the age of 18, his disabled certificate expired, and so did the parking card. We could no longer park. The allowance paid for having a dependent child also stopped, even though it had been recently granted, and if we couldn’t prove he was still disabled, we lose it. (…) He’s no longer entitled to those he gets free because his disabled certificate has expired. Once I got a letter saying they wouldn’t pay his medicines. Either I pay for them or nothing. They cost around €250–300 a month. (…). When we had to arrange for their legal guardianship, which was another of the brilliant times when he reached the age of 18, we had no access to his money in the bank for more than 1 year (…). I was so worn out. I honestly couldn’t bear applying for more documents (Reporter 1).

Gap arising from unforeseen circumstances

They also point out other critical times, such as ageing parents, which involves restructuring received care, adapting to the new situation, fear for the future and worrying about who will look after their children when they die. When this occurs, you make a will to appoint a family relative or a responsible tutor if parents die. All such matters particularly affect caregivers’ QoL and, therefore, that of youths.

Mobility gap

Some other variables that affect this situation are being migrants and refugees, which is a fourth gap; on the one hand, when they arrive in the country, they are unaware of resources, proceedings and opportunities. They do not have the expected requirements, such as nationality or residency; on the other hand, refugees have a limited period to leave the resource where they are.

I´m at an association in one of its flats. At the moment I haven’t got, I can’t rent because I´m out of work. They help me with everything for the time being, but when my time with them ends, I have to seek solutions (…) The date is…next September, but only in my situation (Reporter 25).

Intersectionality

It is also worth stressing that many discourses refer to the over-homogenization of the dependency system and resources, according to law, which leaves aside people’s unexpected situations, multiple disabilities, age or interests. The situations of several children with disability, health problems or conciliation with caregivers are also excluded:

When the blind association or the association specialised in physical disability, or whatever, organises these activities, they take the standard disabled person because they can answer for this type. So, when *anonymized* arrives, they say “no, we can’t”, “it’s not thought for you”, “we don’t have the support resources”. When this occurs, the next paradox appears: associations of people with disabilities ask society for inclusion, but members below do not integrate them. So, you wonder how can you ask something of society that you don’t apply to members? (Reporter 2).

When you go to a day centre, they don’t pay you social security payments, but you cannot work because no boss is willing to put up with you not coming 5 times this month, or 6 times another month, to go to the doctor. (…) Every visit to the doctor involves one test or two. This isn’t because I am ill, but because they are needed for normal check-ups. (…)This is something that dependency does not consider (Reporter 1).

Apart from these criticisms and/or difficulties, we also find lack of resources in rural settings and/or accessibility problems, which means having to move to an urban environment, travel long distances or resort to a care home service and to, basically, limit one’s life project.

You’re fed up because you get up every morning at 5 am …he has cerebral paralysis and his resource is the specialised association. They’ve managed to let him go for 3 days to the Occupational Centre in *anonymized*, which is ridiculous (…) He’s got a high degree of paralysis and has to travel 2 h every day; for heaven’s sake (Reporter 9).

He was there from the age of 8 or 9 years until he was 18. When the time came for him to go to a special school, he couldn’t; they took him to the care home (Reporter 17).

Discussion

The reality of youth with HSN is heterogenous and often linked with complicated situations related to substantial support needs and their socio-family situation, and all this to a greater extent in a highly family-based welfare system, like the Spanish one1,2,12. According to new social requirements, socio-public policies play a fundamental role, and, more specifically, the social services system for covering care needs13. For this reason, studying the experiences of these youth and their families was considered to detect possible shortages in and improvements to them.

Quality of life and family quality of life

Firstly, the availability of resources affects the ability of primary carers to provide care and achieve work-life balance, thereby impacting the quality of life of young people with HSN and their families, as reported in other studies16,17,18,19,20. In this regard, experiences in residential centres favour conciliation, but to the detriment of youths’ socialisation. Concerns were raised about the mixed age groups and levels of support within these settings, as well as the limited opportunities they offer for young people with HSN. Moreover, despite DCs covering the necessary hours for conciliation, they must be supplemented with home help, which social services do not offer. This gap places caregivers at risk of overload, hinders their ability to reconcile employment and caregiving responsibilities, and restricts opportunities for the young people to engage in leisure activities. Additionally, this situation creates a further disadvantage for primary caregivers, who lose access to Social Security contributions, which are necessary to qualify for the family caregiver allowance.

Social services

Regarding the theme of social services, several aspects emerged, such as institutional complexity and the limited legislation regulating young people with high support needs (HSN) in Aragon (Spain), as highlighted by several authors13,16,17,18,19,20. Accordingly, this study identified four main gaps related to this topic. Of the four, three do not appear in the initial approach of this study. These gaps coincide with certain stages of people’s human and/or social development. This implies administration changes, which might involve the legal area or may lie in received services. These stages are: at the age of 18 years, having to review one’s degree of disability and modifying legal capacity, if support is needed for decision making; at the age of 21 years, or when leaving school, which requires a change in resources and the welfare system often having to manage them; with parents’ ageing or them facing unexpected disability situations, which imply restructuring care and fear for the future, and for migrants when they arrive in a country or a different city when they are unaware of resources, proceedings and opportunities.

Intersectionality

Continuing with the aforementioned gap, additional factors contributing to heightened vulnerability were identified1,20,23,24,25. In particular, added difficulties emerge for migrants; inhabitants in rural settings who must take long journeys to resort to resources or must rely on residential services; people with multiple disabilities, whose complex needs are not always met due to the sectoral specialisation of support services. We stress that the intersectionality theme was not initially considered in this study, but cross-sectionally emerged during most interviews -demonstrating its impact on both QoL and social services. Additionally, issues were raised concerning individuals under institutional guardianship, who are not always accompanied or adequately supported. Interestingly, participants reported more positive experiences when guardianship was provided by small organisations, although this also raised concerns about the potential privatisation of rights, a matter of considerable relevance in the context of social services. Hence the need to implement an intersectional perspective while intervening with these people is specified26.

Conclusions and implications for practice

The experiences narrated in relation to social services shared a common thread: stress resulting from overly bureaucratized and homogenizing institutions that negatively impacted their quality of life. Participants expressed that their individual interests and specific and/or unforeseen situations—whether related to the young people themselves or their immediate environment—were not adequately addressed. These situations require responses that go beyond rigid forms and standard procedures (e.g., families with more than one child with a disability, multiple disabilities, long travel distances from rural areas, etc.). In light of this, and in response to the final research question, it becomes necessary to propose an intervention model that is flexible and centered on the individual’s life project.

Moreover, it is essential to rethink the available resources and benefits, along with their compatibility with one another. This includes offering more inclusive and tailored opportunities (e.g., in employment, education, support, or housing) that are aligned with the interests and needs of the individuals, thereby fulfilling the obligations outlined in the CRPD. At the same time, such models must not ignore the lived reality of families, nor the additional burdens that social services often place on them—burdens that directly impact their quality of life. In this sense, there is a strong call to expand access to options such as personal assistance benefits.

In conclusion, although the implementation of the SCDPA appears to represent progress in the care of individuals with intellectual disabilities and their families, the current system of bureaucratic processes and available resources is perceived as overly standardized, failing to consider the real interests and needs of both caregivers and young people at different life stages. It is therefore necessary to evaluate the resources provided, the level of investment, the administrative procedures involved, and the excessive bureaucratization of the system from a biopsychosocial, systemic, and flexible perspective that truly promotes the fulfilment of the rights recognized in the CRPD.

Future lines of research

This study proposes future lines of research related to how the SCDPA ( System of Care for Dependency and Personal Autonomy) could be reorganized to promote the recognition of the rights of young people and their families. In addition, it opens the possibility of analysing the challenges faced by young people with HSN (High Support Needs) through an intersectional and quantitative approach, using mediation and moderation analyses based on national surveys, and taking into account the variables identified in this study. Finally, progress can be made in establishing evaluation indicators through the study of best practices adopted in this field.