Children's Services Short Breaks (Respite) Review
| Authority | Manx Care |
|---|---|
| Date received | 2024-09-17 |
| Outcome | All information sent |
| Outcome date | 2024-10-17 |
| Case ID | 4131581 |
Summary
A request was made for the independent children's short breaks (respite) review, its recommendations, and terms of reference commissioned by Manx Care. The authority responded by releasing all requested information, including the review by Disability Awareness and the specific terms of reference.
Key Facts
- Manx Care released the full independent short breaks review conducted by Disability Awareness.
- The review aims to determine if current respite provision is fit for purpose for children with disabilities.
- Terms of reference include examining bed capacity, future planning, and potential charging models.
- The review considers utilizing Braddan Hub bedrooms for respite and long-term care.
- The request was received on 17 September 2024 and closed on 17 October 2024.
Data Disclosed
- 1500 children with disabilities living on the Isle of Man
- 2021 Island Plan
- 17 September 2024
- 17 October 2024
- 68 pages
- 3 documents
Original Request
Dear Sir / Madam Please provide a copy of the independent children's short breaks review (respite), and its recommendations, commissioned by the department alongside the terms of reference.
Data Tables (12)
| "Raising a child with special needs can be both challenging and rewarding, |
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| often within the same day (or even hour!). Our emotions as special needs |
| parents are complicated. We can simultaneously feel like giving up and also be |
| ready to go to the ends of the earth for our child. We experience high highs and |
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| low lows. We fight battles for our child to get them services, appointments, |
| support, understanding, and acceptance. We often fail and feel hopeless. |
| Sometimes the smallest bit of progress sparks intense pride and joy. There is no |
| textbook for parenting a child with special needs. We navigate this journey |
| without clear instructions. Special needs parent isolation is very real and very |
| debilitating. Bottom line is we need each other. We need help. We need support. |
| It takes a community, and special needs parents especially need that |
| community effort to prevent isolation, overwhelm and burnout.” (4) |
| ‘Short breaks provide children with opportunities to enjoy different experiences, |
|---|
| establish friendships and develop confidence, independence and |
| social/emotional skills.’ (5) |
| WHAT OTHER MANX PROVIDERS |
|---|
| OFFER |
| Rebecca House is a purpose built facility which is part of Hospice Isle of Man. It provides |
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| respite, palliative and end of life care for children with life-limiting or life-threatening |
| conditions from birth to 18 years. Rebecca House currently provides regular respite care to 25 |
| young people and their families, and have a further 7 young people known to their service |
| who can make a request for respite care when the needs arises. The respite offer includes |
| day visits, summer holiday care and overnight stays of one night or block stays of more than |
| one night. Rebecca House allocate respite to families based on the Resource Allocation |
| Framework, a UK nationally recognized framework used in most palliative care providers. |
| There are currently five young people who access both Rebecca House and the two respite |
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| centres of Ramsey and The Hub. |
| There are two Resource Centres which provide day care and respite care for |
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| children with disabilities. For further details of resources available please |
| contact: |
| Other comparable local authorities, such as Jersey and the Isle of Wight have dedicated |
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| pages on their Government websites which clearly show the local offer of short breaks and |
| how to access them. The Isle of Man has no such comparable information sharing. There is |
| little clarity or sense of sharing, and no sense of profile in terms of what is available. This has |
| created a ‘closed off’ offer which appears to only offer support when given, as opposed to |
| when requested. Although this is a misleading concept, the lack of information available |
| creates this perception. |
| There are two Resource Centres which provide day care and respite care for |
|---|
| children with disabilities. For further details of resources available please |
| contact:. |
| This represents an insufficient commitment on behalf of the government towards the families |
|---|
| of children with disabilities, which needs to be rectified. On the government website there |
| needs to be a dedicated section discussing the short breaks offer. The website does not just |
| need to focus on the short breaks offer however. It could offer advice and guidance on al |
| aspects of support offered to children with disabilities and their families. |
| Not to charge |
|---|
| There is ongoing debate about whether or not the short breaks for children with disabilities |
| and additional health needs, provided by Manx Care, should involve a financial charge to |
| parents. This currently happens in short breaks provision for adults with disabilities. It is this |
| reviews recommendation that this is not introduced to the families of children with |
| disabilities. |
| There appears from certain stakeholders to be a punitive incentive to charging families to |
| access short breaks. That if charges were introduced, families would be more |
| appreciative and responsive to the care they receive. That because families receive |
| disability benefits, these should be used to contribute to the short breaks provision they |
| receive. |
| This review does not recommend charging for short breaks provision. |
| The caring element of parenting a child with a disability often means that parents and |
| carers are not able to work, or can only work on a part-time basis. This can make it hard |
| for parents and carers of disabled children to earn enough to stay out of poverty, and |
| makes these families extremely vulnerable. There are also additional costs to parenting a |
| child with a disability. |
| According to a study by Mencap, families of disabled children on average face extra costs |
| of £581 per month(20) |
| To introduce a charging system would add extra pressure onto families who may already |
| be struggling financially. |
| The reason we require specialist short breaks provision is that our current universal offer |
| does not adequately provide for children with disabilities and long term health needs. To |
| charge for a specialist service which is essential to the health and wellbeing of one of our |
| most vulnerable communities is not recommended by this review. |
| ACTIONABLE |
|---|
| RECOMMENDATIONS |
Full Response Text
Manx Care Noble’s Hospital, Strang Braddan, Isle of Man IM4 4R (01624) 650 000
Our ref: 4131581 17 October 2024
We write further to your request, received 17 September 2024, which states:
"Dear Sir / Madam
Please provide a copy of the independent children's short breaks review (respite), and its recommendations, commissioned by the department alongside the terms of reference."
Our response to your request is as follows:
I have enclosed copies of the information that is being released to you.
- The Isle of Man Shorts Breaks Review by Disability Awareness
- Short Stay Service Review - Terms of Reference
Please quote the reference number 4131581 in any future communications.
Your right to request a review
If you are unhappy with this response to your freedom of information request, you may ask us to carry out an internal review of the response, by completing a complaint form and submitting it electronically or by delivery/post.
An electronic version of our complaint form can be found by going to our website at https://services.gov.im/freedom-of-information/Review . If you would like a paper version of our complaint form to be sent to you by post, please contact me and I will be happy to arrange for this. Your review request should explain why you are dissatisfied with this response, and should be made as soon as practicable. We will respond as soon as the review has been concluded.
If you are not satisfied with the result of the review, you then have the right to appeal to the Information Commissioner for a decision on; 1. Whether we have responded to your request for information in accordance with Part 2 of the Freedom of Information Act 2015; or 2. Whether we are justified in refusing to give you the information requested.
In response to an application for review, the Information Commissioner may, at any time, attempt to resolve a matter by negotiation, conciliation, mediation or another form of alternative dispute resolution and will have regard to any outcome of this in making any subsequent decision. More detailed information on your right to a review can be found on the Information Commissioner’s website at www.inforights.im. Should you have any queries concerning this letter, please do not hesitate to contact me. Further information about freedom of information requests can be found at www.gov.im/foi.
I will now close your request as of this date.
Yours sincerely
Short Stay Service Review (C&F Social Care) Terms of Reference
The review will examine if the current provision is fit for purpose and meets the needs of the current children with disabilities or complex health needs on the island.
It will examine this by reviewing:
a) The current criteria for overnight and respite provision
b) How many beds do we need to continue to provide overnight respite, emergency respite and longer periods of respite for families in crisis? What projections for the future
c) Future planning for children and young people who we know will require long term care. How can we meet this need?
d) Can Braddan Hub bedrooms be utilised for respite/long term care and allowing the Centre to still be used for daily respite
e) Should we consider charging for the service, what would that look like and how would this be assessed/means tested?
f) If we were to use both centres as a residential setting/respite setting by how many would staff need to increase?
g) Review the current pilot offer for outreach provision
h) Would it be viable to have a health practitioner on site or identified for specific training and support to the provisions?
i) Methodology to include forums with parents, staff and partner agencies, such as health, education and commissioned services
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INTRODUCTION
‘How a society treats its most vulnerable is always the measure of its humanity’
This review has been commissioned to look at the short breaks respite offer that Manx Care
currently provides to children with disabilities and additional health needs and their families.
It’s aim being to review whether the offer meets the needs of these families and to make
proposals to offer a short breaks offer that enables equality for all.
Every child on our island deserves the best possible start in life. There should be an equality of
opportunity for all children to be all that they can be. Children with disabilities represent some
of the most vulnerable members of our society. And some of our most valuable. With an
estimated 1500 children with disabilities living on the Isle of Man, our collective support and
vision to enable a quality of life for them is a primary concern for all.
One of the priorities of the 2021 Island Plan is Building Great Communities, with reference
given to the need for ensuring the needs of those with disabilities are met- including short
breaks. Our island’s Childcare strategy highlights that there is a need for more support for
children with disabilities and complex needs.
This review forms part of this lineage. Short Breaks provide an essential bridge for children
with disabilities to enjoy everything the Isle of Man has to offer, and to lead fulfilling and
meaningful lives. And they provide a vital link to ensure that their parents and carers can
sustain the resilience they so vitally need.
Special thanks go to all of the professionals, stakeholders, parents & cares who contributed to
the findings and recommendations within this review.
And particular thanks go to all the children, young people and adults with disabilities who
were consulted and listened to. Their eloquence, honesty and insight was integral to this
review, and their contribution has been highly valued. This review has been written on their
behalf.
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SUMMARY OF FINDINGS The lack of residential provision has proved significantly detrimental to the short breaks offer for children with disabilities and long term health needs. The introduction of residential provision is essential.
The provision of tier 3 short breaks provision for children with disabilities and long term health needs is not adequate for the current needs of the Isle of Man.
The introduction of more tier 3 short breaks provision would alleviate the pressure on tier 4 short breaks and reduce waiting lists. And would eventually enable The Hub to become a Tier 4 service when the need arises.
The provision of tier 4 short breaks provision for children with disabilities and long term health needs is partly adequate, but requires improvement.
4 |
SUMMARY OF FINDINGS
This review finds that all of the contributing factors the lack of a residential service for
children with disabilities on the Isle of Man has had the most detrimental impact on the
current delivery of an effective short breaks service. A separate residential service is the
priority recommendation.
Away from this impact, the provision of tier 4 overnight short breaks is partly adequate.
Ramsey Respite Centre meets the current need for a group setting overnight short breaks
service, but what is lacking is the inclusion (and required option) of a specialist short breaks
foster care service.
As the number of children with disabilities and additional health needs on the Isle of Man
continues to grow, it is recommended that within a one-to-three period, The Hub will again
be required to provide an overnight short breaks service and cease its current service.
After-school, weekend and school holiday provision currently provided by The Hub should be
re-classified as a tier 3 service, and replaced over a one-to-three year period by an effective
link work service. This service should be community-based.
The tier 3 level of short breaks needs to be greatly expanded to meet the needs of children
who currently do not receive short breaks.
There needs to be an effective outreach service to assist and support parents and carers
within the family home, thus reducing to some extent the need for tier 3 & 4 short breaks
provision.
There needs to be the introduction of a direct payments/personal budget scheme to assist
and support families to have greater autonomy and choice.
The increasing number of children with additional health needs requires the increased
inclusion of healthcare professionalism within the short breaks service.
There is a lack of disability-specific training for those working in short breaks provision.
There is a lack of quality external inspection and quality assurance of the current short breaks
provision.
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CONTENTS Introduction ...................................................................................................................................................................................................................... 2 Summary of findings ............................................................................................................................................................................................... 3 Recommendations ................................................................................................................................................................................................... 5 Setting the scene ............................................................................................................................................................................................................. 9 Short breaks .................................................................................................................................................................................................................... 10 What defines a short break?...................................................................................................................................................................... 10 Why are short breaks needed? ................................................................................................................................................................ 11 The benefits of short breaks ....................................................................................................................................................................... 13 Definition of tiered short breaks ............................................................................................................................................................. 13 Case studies- A Day In The Life .................................................................................................................................................................... 14 of a young person ............................................................................................................................................................................................... 14 of a parent/carer .................................................................................................................................................................................................. 15 Consultation process ..................................................................................................................................................................................................16 Listening to others ..................................................................................................................................................................................................... 17 Who was listened to ........................................................................................................................................................................................... 17 How they were listened to ............................................................................................................................................................................18 Comparative services ................................................................................................................................................................................................19 Within the UK ................................................................................................................................................................................................................. 20 Isle of Wight .............................................................................................................................................................................................................. 20 Jersey ............................................................................................................................................................................................................................... 21 Larger local authorities ................................................................................................................................................................................. 22 Worldwide ....................................................................................................................................................................................................................... 23 Comparison of UK Tiered Services .......................................................................................................................................................... 24 Health & Third sector short breaks ............................................................................................................................................................... 25 What other Manx providers offer .............................................................................................................................................................. 26 Crossroads ................................................................................................................................................................................................................ 26 Hospice Isle of Man ........................................................................................................................................................................................... 26 Isle of Man Youth Service ............................................................................................................................................................................ 26 Short breaks current state .....................................................................................................................................................................................27 8 |
Current Offer ....................................................................................
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