Respite Allocation Toolkit & Decision Making

AuthorityManx Care
Date received2023-12-18
OutcomeSome information sent but part exempt
Outcome date2024-01-23
Case ID3578638

Summary

The requester sought details on the review of the respite allocation framework, criteria for service reductions, and impact assessments for disabled children between October 2022 and 2023. Manx Care responded by providing a September 2023 referral toolkit and scoring matrix for respite services, though the outcome was noted as partially exempt.

Key Facts

  • The Children with Disabilities (CwD) Team developed the respite allocation toolkit in September 2023.
  • The toolkit references the NHS Continuing Healthcare Decision Support Tool Guidance 2022.
  • Referral reasons include carer respite, socialisation, early intervention, overnight respite, and independence skills.
  • A scoring system is used to assess needs, with 'High' rated at 10 points and 'Low' at 2 points.
  • Assessment criteria cover care needs, sleep hygiene, supervision requirements, family support, and emotional support.

Data Disclosed

  • September 2023
  • October 2022-2023
  • 10
  • 8
  • 6
  • 4
  • 2
  • Less than 6 hours
  • 16+

Original Request

Dear sirs, Please confirm when the respite allocation framework tool was reviewed between October 2022-2023 alongside the following information: 1) The specific factors or considerations that led to the decision to reduce children's respite services. 2) Details on the criteria or parameters that determine the increased threshold for accessing these services. 3) Any assessments, reports, or studies conducted to evaluate the impact of these changes on the well-being of children and their families. 4) Information on any alternative support mechanisms or services that have been put in place to address the needs of affected children and families. 5) Any communications, memos, or documents exchanged among relevant stakeholders discussing the reduction in respite services, amendments to the respite allocation toolkit and the rationale behind it. 6) a copy of the equality impact assessment (or similar demonstrative method) undertaken by the department in relation to its decision making for disabled children Given the Ofsted report, the independent short breaks review and recommendations in relation to improve short breaks. Please also provide copies of the following: 1) the actions the department has taken since the independent short breaks review. 2) any communication, memos etc by relevant stakeholders in relation to the short breaks review and actions required for implementation Many thanks

Data Tables (31)

High Medium/High Medium Low/Medium Low
10 8 6 4 2
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
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
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
Supervision
required on a day
to day basis
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.
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.
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
Family and Social
Support
Emotional
Support
Behavioural
needs
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
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
Communication
Needs
Childs condition
and overall
stability
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
Communication needs
Toileting Needs
Socialisation Needs
Childs conditions and overall
stability
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
High Medium/High Medium Low/Medium Low Other factors Siblings with additional needs 2 Parents/ Carers working in the day time and/ or caring for a pre- school child or additional caring responsibilities 2
10 8 6 4 2
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
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
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
Supervision
required on a day
to day basis
awake. environment with monitoring equipment a safe environment. 4
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.
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
Family and Social
Support
Emotional
Support
Behavioural
needs
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
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
Communication
Needs
Childs condition
and overall
stability
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
Communication needs
Toileting Needs
Socialisation Needs
Childs conditions and overall
stability
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
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s d e e N e r a C y a d a n n s is o o is d a b iv e r e r iu y a p q d u e o Srt la ic o S d n a t yr o lim p p au FS la nt o it o m r o p p u ES d n a n o it y t ilib id na o c t s s lla d r lih e v Co
Name: Date of Birth:
Factors taken into account Score
Care Needs
Supervision required on a day-to- day basis
Family and Social Support
Emotional Support
Childs condition and overall stability
Other factors
Total
Total points Respite allocation
Less than 20 1 Overnight Per month
20-29 2 Overnights per month
30-35 1 Overnight per week
36-40 2 Overnights per week
Over 40 2 Overnights per week

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

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.

4 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 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

Date Completed: Social Worker Completing:
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

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

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

awake.

environment with monitoring equipment

a safe environment.

4 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

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

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