Family Support Census Waiting Times Research “It’s like death by thousand cuts. It’s gotten more difficult to access services. More of a battle. Lots of waiting for things, difficult to get hold of people you keep hearing that they are short staffed.” Since the formation of the UK Coalition government in 2010, government policy has been one of ‘austerity’ in order to reduce the budget deficit. This research study has sought to highlight the impact that this has had, through the changes to local services, on the overall life satisfaction of parent carers of disabled children. Through our family support services we know: Families are waiting longer for appointments and assessments; it's harder to get services after assessment; families are having to use lawyers and the courts to challenge decisions they are increasingly being charged for services and equipment accessing support and diagnosis from CAMHS continues to be almost impossible; this is causing long term damage and costly support later on. However, we and our partner charities identified there isn’t robust evidence how the scale of cuts affecting families whether that be changes to local services or financial support. . So earlier this year, Contact a Family launched our first ever Family Support Census to find our more. The Census covers 3 main areas: Changes to local services and financial support Life Satisfaction Support networks  

About the respondents Nearly 2000 responses between May-July 2015 90 % white mothers, nearly half aged 41-50 A third say they or their partner has a disability or health condition Just under a third are lone parents Over half not in paid employment (56%) - 13% in full-time and 31% part-time. A third have more than one disabled child Most responses from NW and SE England - North West - 280 England - North East -123 England - East - 119 England - West Midlands - 152 England - East Midlands - 93 England - South East - 324 England - South West - 184 England - Yorkshire & Humberside - 148 London - 126 Scotland - 100 Wales -84 Northern Ireland - 28 Total1,761

About the children 62% of children aged 6-15 59% of children have a moderate or severe learning disability 57% of children have ASD 48% of children have speech, language and communication difficulties

Support Networks 45% say they have a strong support network with close family and friends. 26% get help caring for their disabled children more than once a month 43% never receive help from close family or friends 23 % say they have strong support network outside of their close family and friends e.g. neighbours, church, other parents. 69% of respondents never receive help caring for their disabled children outside their close friends or family

Help from local council 37% of respondents are not receiving any help from their local council for their disabled child: 38% of those receiving no help were not aware that they could get help 32% highlight a lack of suitable services in their local area to meet their children’s needs 30% have been told that their children do not meet the eligibility criteria Only 6% of those receiving no help say that they do not need any help Q34 If you are not receiving help for your disabled child, why is this?

Needs Assessments 49% of respondents have had a needs assessment Q33 Has your child ever had a needs assessment from your local authority? Answered: 1340  49% of respondents have had a needs assessment 40% have received services as a result 23% of respondents didn’t know that they could get a needs assessment 5% of respondents requested needs assessments but were refused 59% have never had a carers assessment 30% have had a carer assessment (remainder don’t know)

Practical help needed from local services No Support available in local area: Areas child needs extra support in: Receiving Support: Social Communication and Relationships- 89% 37% 28% Behaviour and Emotions- 84% 34% 23% Communication, Speech and Language- 81% 52% 13% Personal Care-70% 34% 17% Mobility and posture- 62% 37% 11% Sleep- 59% 23% 18% Continence- 51% 30% 10% Hand Function- 50% 25% 8% Vision- 45% 34% 3% Feeding-38% 23% 7% Pain- 35% 23% 8% Hearing- 28% 18% 3% This slide shows the difference between the type of extra support children need, compared to what they actually receive.

Type of support received for child's extra needs Top 10 services: 63% have access to Community Paediatrician or Child Development Team 50% have access to Speech and Language Therapy 46% have access to Transport - to and from school 37% have access to Occupational therapy 34% have access to a Social Worker 35% have access to Equipment eg. Wheelchairs 34% have access to Direct Payments / Personal Budget 33% have access to Educational Psychology 32% have access to Physiotherapy 30% have access to Equipment or extra help in a childcare setting

Waiting times following a referral Top 3 services families wait longer than 12 months for: Child Adolescent and Mental Health Service (CAMHS) (33%) Social work team/children's disability team (24%) Educational Psychology (23%)

Impact of waiting times Impact of these waiting times, open comments indicate main themes are: battles, feeling of not being able to cope, guilt increased stress and frustration for whole family delayed development , conditions and behaviours getting worse attendance and progress at school suffers problems at work for parents knock on affect across services We had to apply for funding for my child to receive an occupational therapy assessment as the waiting list is too long. My child's mental health is deteriorating and we are now waiting for camhs. Our child had a mental health breakdown due to anxiety caused by his condition... I and other family members have or had severe depression brought on by a grave lack of support from the services... Detrimental! Left to fend for ourselves. Horrendous, every day feels like we are fire fighting

Changes in amount of help in the last year Q36 If you are receiving help for disabled child/children have you experienced any changes in the amount of help you have receive in the past year? Answered: 1050  Of those respondents who are receiving help from their local authority: 10% have seen an increase in the amount of help they are receiving 33% report a decrease in the amount of help over the last year Of those who have seen changes to the amount of help they are receiving, 53% were not consulted.

Drawbacks of decreased help and benefits of increased help Impact of these changes on respondent’s families, open comments indicate: Where the amount of help has been decreased, respondents consistently highlight: Increased stress and strains on mental and physical health Less trust in authorities and social services Increased financial strain Less social inclusion for their children Where the amount of help has been increased, respondents highlight: Stress alleviation Greater respite and more personal time for parents/other children Children less socially isolated

Short Breaks The majority (53%) of respondents have never used short breaks services. Commons themes from parents: Never offered. Don't know about them. No information on these, Don’t meet criteria. Waiting for assessment Of those using short breaks: Nearly twice as many respondents accessed short breaks following assessment rather than via early help/self-referral (24% vs 14%). Only 9% agreed they can access the short breaks they need The majority (57%) say they now use fewer short break services than in the past. Of these 42% say this is due to the closure of services 56% agreed that it is becoming more difficult for families to access short breaks 63% agreed that they were worried that short breaks will face spending cuts   The responses from both the survey and the focus group sessions indicate that parent carers who have regular access to short break care are happier, suggesting that they are less stressed as a result. Moreover, parent carers who had less or no access to short breaks services reported increased stress and anxiety.

Are things getting worse or getting better? Information on local services Compared to this time last year, 44% of respondents think that information on local services has gotten significantly worse (0-3 on the scale) Only 10% of respondents think that information has gotten significantly better (7-10 on the scale) Services for disabled children in your local area Compared to this time last year, 59% of respondents think that services for disabled children in their area have gotten significantly worse (0-3 on the scale) Only 5% of respondents think that services have gotten significantly better (7-10 on the scale) Eligibility criteria Compared to this time last year, 63% of respondents think that eligibility criteria for accessing services have gotten significantly worse (0-3 on the scale) Only 5% of respondents think that eligibility criteria for accessing services have gotten significantly better (7-10 on the scale)

Life satisfaction and happiness 32 % of respondents were unsatisfied with their family lives this year (scoring 0-3 on the satisfaction scale) This figure has increased from 29% last year 30% of respondents were satisfied with their family lives this year (7-10 on the scale) This has dropped from 33% last year 37% of respondents are not optimistic about their families future, thinking 12 months ahead (0-3 on the optimism scale) Only 26% of families are optimistic about their families future (7-10 on the scale) Q17 Thinking ahead to this time next year, do you think your overall happiness will

Barriers to Happiness 25% of respondents describe themselves as happy (7-10 on the scale) 35 % of respondents describe themselves as unhappy at present (0-3 on the scale) Open responses (based on over 1000 comments) cite the primary barriers to happiness of respondents as: Constant stress Budget cuts and financial strain Lack of support from authorities Lack of sleep and exhaustion A strain on their mental and physical health A lack of respite Fears for their children’s future

Links between support and standard of living 45% of respondents who had experienced an increase in the amount of help they receive reported their standard of living to have stayed the same. Of those who experienced a decrease in the amount of help they received, 75% reported that their standard of living had decreased. In some cases parents are receiving extra financial support, this is not significant enough to improve the living standards Links between support and standard of living [Support groups] have been an absolute lifeline. Not only for my sanity, but because those parents have a wealth of information… I think when we surround ourselves with people who do understand

Focus Group feedback Local services Participants reported increasingly more difficult to access support and advice from local authority staff. lack of coordination between services Life Satisfaction Participants who had seen an increase to the amount of help they received reported a positive effect on family life because their disabled child was happier and they felt better supported as a family. Support Networks Those that considered themselves to have a close network of family and friends reported that often they could not rely on them to help with the caring of their disabled child. The value of local support groups was recognised by all participants - good source for advice and companionship [Support groups] have been an absolute lifeline. Not only for my sanity, but because those parents have a wealth of information… I think when we surround ourselves with people who do understand

Conclusions Increased help when caring for a disabled child ultimately contributes to less feelings of stress and anxiety felt by parent carers, and therefore higher levels of overall life satisfaction, and emotionally healthier. Those who have experienced a decreased in local services are significantly less satisfied and are more likely to be suffering from mental health issues such as anxiety, stress and depression. One service that can be considered of particular support is short breaks The responses from both the survey and the focus group sessions indicate that parent carers who have regular access to short break care are happier, suggesting that they are less stressed as a result. Moreover, parent carers who had less or no access to short breaks services reported increased stress and anxiety The results demonstrate that local authorities despite pressure to cut services should ensure that parent carers are offered support when caring for their disabled child, to reduce associated stress ,anxiety and strain on their family as a whole. We need to make this point loud and clear to government. a number of interesting findings that support the link between changes to local services and the overall life satisfaction of parent carers. This study has found that changes to local services, for example short breaks services, does affect life satisfaction, with parent carers likely to be less satisfied if the level of provision of services has decreased, compared to those who have seen an increase and are generally happier.