Children's & Families Disabilities

Summary

The requester asked for statistics on children's disability services and the criteria for case closure, to which Manx Care responded by providing a detailed decision-support tool and referral form rather than the specific numerical data requested.

Key Facts

• The response includes a 'Referrals to Respite Services' form developed by the Children with Disabilities Team in September 2023.
• The authority provided a scoring matrix for assessing care needs, including technical support, sleep hygiene, and supervision requirements.
• The response references the NHS Continuing Healthcare Decision Support Tool guidance from 2022.
• Specific numerical data regarding open cases, referrals, and closed cases over the last three years was not included in the provided text.
• The document outlines various reasons for referral, such as carer respite, socialization, and early intervention.

Data Disclosed

• September 2023
• 2022
• High: 10
• Medium/High: 8
• Medium: 6
• Low/Medium: 4
• Low: 2
• 5-6 episodes
• Less than 6 hours
• 16+

Original Request

Dear sirs I am writing to request the following information regarding services provided to children with disabilities:m by the children's and families team. 1. The total number of open cases involving children with disabilities. 2. The number of children with disabilities currently accessing services. 3. The current number of children awaiting services 4. The number of referrals to the service in the last 3 years, broken down by year 5.The number of cases involving children with disabilities that have been closed over the last three years, broken down by year. 6. Please provide details and copies of the criteria , policy documents, decision making tools and process used to determine the suitability for closing a case involving a child with disabilities. Thank you for your assistance. I look forward to your response within the statutory timeframe. Yours faithfully,

Data Tables (17)

Full Response Text

Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

Referrals to Respite Services
Children with Disabilities Team

Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

Reasons for Referral: Please highlight all that apply
1. Carer Respite Day Time/ After School/ Weekend

1. Socialisation / Social Development

2. Early Intervention /Prevention

3. Overnight Respite

4. Independence/ Life Skills 16+

5. Outreach

6. Supporting children to cope with Change and or Transitions

7. Youth Club

8. Parents of Pre-Schoolers Support

Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

High 10 Medium/High 8 Medium 6 Low/Medium 4 Low 2 Other factors

Care Needs
“Technical support” -
tracheostomy,
colostomy, illeostomy etc.

Oxygen and
suction.

Hoisting and/or
problems due to weight and lack of
Mobility. Complex medications & feeding i.e. time
Consuming.

Dependent on main
carers for hygiene, feeding i.e.
Gastrostomy & NG feeds. To a higher level than would be
expected for a child of that age. Dependent on main
carers for hygiene,
feeding etc. slightly above expected for age

Able to undertake most personal care tasks
independently with
prompting/support

Siblings with additional needs 2

Sleep Hygiene
Requires significant care throughout the night for prolonged periods as a result of medical, feeding or behavioural needs.
Use of a visual monitor required

Frequent need for physical support through the night – to re-settle, administer medication; feed or to turn

Frequently unsettled during the night. Less than 6 hours unbroken sleep per night.

And/or Child not sleeping in their bed.

Generally sleeps well, can have unsettled nights –

And/or

Child is prescribed sleep medication
Child sleeps through night in line with what would be expected for a child of that age

Parents/ Carers working in the day time and/ or caring for a pre- school child or additional caring responsibilities
2 Supervision required on a day to day basis
Constant monitoring
Required due to health needs or behaviour,
cannot be left alone whilst awake.

Frequent monitoring
Required due to health needs or behaviour,
cannot be left alone whilst Regular monitoring
required, more than expected for this age. Can be left alone in a safe Regular monitoring required, more than expected for this age. Can be left alone in a safe environment

Regular or frequent monitoring required, due to age and as
expected for a child of this age. Can be left alone in

Unable to attend school regularly due to complex needs

4 Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

awake.

environment with monitoring equipment

a safe environment.

Family and Social Support Unsupported main carer.
No family or social support. No family or social support from outside
immediate family unit

Minimal family or social support

Some support by
family and/or social network.

Well supported by family and/or social network. Current level of support is adequate. Does not receive any other Respite

2

Emotional Support
Significant illness of main carer/immediate family member i.e. mother father or
siblings

Family difficulties
requiring temporary extra support i.e. births, acute illness.

New equipment, new care needs or unstable condition causing
frequent changes in care needs requiring extra support.

Extra emotional
support needed.

Current level of
emotional support is adequate.

Temporary changes eg. House move, parental/ sibling ill health

2 Behavioural needs
Long Term Behavioural needs, child finds it difficult to function most of the time. Or
Daily episodes of physical violence/ aggression or self injurious behaviour . Medication prescribed and or recommended.
Awaiting CAMHS intervention.
5-6 episodes of heightened behaviours per week, impacted by lack of sleep or other medical/ sensory needs.
Medication prescribed and or recommended.
Awaiting CAMHS intervention. 3-4 episodes of heightened behaviour per week. Challenging behaviour can be managed by carers who know the child well. Behaviours are seen in more than one setting.

Some support in managing behaviour is required. Child can occasionally become overwhelmed and have “melt downs” or episode of challenging behaviour – infrequent and short lived
Infrequent or rare episodes of challenging behaviour observed

Safeguarding Concerns

4 Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

Communication Needs
Non Verbal dependant on carer knowing child well. No successful consistent method of communication
Limited methods of communication leading to regular difficulties in terms of behaviour
Successful means of communication in some settings; PECS, Sign Along, Total communication
Competent grasp of spoken language – able to use spoken language, sign etc. Able to get their needs understood
Child has a fluent language – spoken or sign. Able to communicate universally with others

NB. If a child is between catgories they can be scored as such, i.e. 3,5,7,9 Toileting needs
Doubly incontinent – dependant on carers for all continence needs to a higher level than would be
expected for a child of that age Early stages of Toilet Training.
Support required to a higher level than would be
expected for a child of that age Continent most of the time with bladder. Support required to a higher level than would be
expected for a child of that age Child is usually continent with bladder throughout the day To an age appropriate level/as expected for age. Child able to use the toilet independently without support to an age appropriate level/as expected for age.

Socialisation
No ability to access extracurricular activities due to health, behavioural or communication needs
Can attend specialist clubs but requires support. Struggles to initiate play independently
Can access specialist clubs with minimal or no support. Opportunities available are less than that of mainstream peers
Able to access mainstream activities and or clubs with support
Able to access a variety of clubs and or activities with no additional support

Childs condition and overall stability
Unstable.

Progressive/degenerative disease. Child has had significant deterioration since Unstable.

Condition causes unpredictable events i.e life threatening Usually stable.

Non progressive
condition but currently acutely unwell. Stable.

Non degenerative or non progressive diagnosis. Survival in to adulthood is Stable

Condition has limited impact on overall health and development

Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

diagnosis.

infections, frequent hospital admissions. Seizures requiring frequent medical intervention.

Progressive/ degenerative condition which will cause future deterioration.

Potential for rapid
deterioration in
condition.

Frequent Seizures

Need for future
interventions to
maintain stability
e.g. Surgery

likely.

Or

Potential for improvement of condition with appropriate treatment/therapies

Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

Allocation Assessment Chart Childs Name:

DoB:

Factors taken into account

Score
Care Needs

Sleep Hygiene

Supervision required on a day to day basis

Family and Social Support

Emotional Support

Behavioural Needs

Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

Communication needs

Toileting Needs

Socialisation Needs

Childs conditions and overall stability

Total Score

Total Points Respite Allocation Braddan Overnight Respite
where issues with sleep have been identified Less than 20 No Services Required No Services Required 20 – 40 1 Session per month 1 Session per month 40-60 2 Sessions per month 2 Sessions per month 60-80 Weekly Sessions Weekly Sessions 80 + Weekly sessions + Outreach package of support short term 2 Sessions per week
90+ Intensive package of support, 2 sessions per week + outreach support Reviewed after 6-12 weeks Explore Shared care
Developed by CwD Team September 2023, Ref. https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare- decision-support-tool-guidance-2022.pdf

Date Completed:
Social Worker Completing:

Setting Number Service waiting for Braddan Hub 9 After school Ramsey Respite Centre 3 Overnight respite 4 Outreach 2 Pre-school sessions 18 total

1. The number of referrals to the service in the last 3 years, broken down by year is as follows:-

Date Range Number of Referrals (contacts) 1 January 2021 – 31 December 2021 79 1 January 2022 – 31 December 2022 112 1 January 2023 – 31 December 2023 152 1 January 2024 – 18 July 2024 144

1. The number of cases involving children with disabilities that have been closed over the last 3 years, broken down by year is as follows:- Date Range Number of Referrals (contacts) 1 January 2021 – 31 December 2021 35 1 January 2022 – 31 December 2022 49 1 January 2023 – 31 December 2023 50 1 January 2024 – 18 July 2024 20 Grand Total 154

2. The criteria for cases to be considered for closure to social work are:- • The case has been stable with no changes to the plan or the support provision for a minimum of 6 months; • Where, other than the standard 6 weekly visits, there has been no other social work involvement, support or intervention; • Where reviews have revealed that all is progressing well and no concerns have been raised.

If a child is continuing to access Respite Services through Braddan Hub but satisfies the criteria, they are transferred to Disability Service Provision where there is no

named social worker and the case is reviewed annually. Cases are reviewed using the Respite Allocation Framework (enclosed), then a Child with Complex Needs Review would be held. If concerns are raised on a case which is open to “Disability Service Provision” the information would be recorded.

A strategy meeting would be held as appropriate and the case would be reallocated to a social worker. A NARRATES1 assessment would be carried out and the case would then follow the NARRATES process under section 46 of the Children & Young Persons Act 2001, or the Child with Complex Needs process. More information on the process for Child with Complex Needs (CwCN) plans and

reviews can be found online - https://isleofmanchildcare.proceduresonline.com/chapters/p_ch_reviews.html

If it is felt that the services being provided no longer met the child’s needs and needed to be increased, the case would be re-allocated to a social worker for further assessment and a new request for services would be under taken and reviewed through a CwCN Plan. If it is felt that the services are no longer required, the case could be closed completely to Manx Care.

1 NARRATES stands for Needs Assessment, Robust Risk Analysis, Timely Effective Support

Please quote the reference number 3986733 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