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We Want to Play Too! 2013

Executive Summary

Background

Parentsactive carried out a survey in May 2013 to gather information on play and parks. The main purpose of this survey was to follow up on our report in 2011 “We want to Play too” which highlighted parental expectations of what Play and Parks mean to their disabled child. The report was widely distributed to key professionals and also made its way to the London Mayor’s office. The purpose of this survey and the report is to judge the progress made since then, to find out if respite is really adequate, what are the parental expectations of the proposed disabled children’s centre and whether they continue to enjoy the facilities in parks

Approach/Methodology

Parentsactive designed the questionnaire and it was carried out mostly online* via a link to the study on www.surveymonkey.com (*however some people completed paper questionnaires which were manually data-entered).

Parentsactive encouraged survey completion via regular emails to the parents in their database. The survey received 56 responses.

This report is based not only on the survey but also on feedback received from parents at meetings, coffee mornings and individual support offered to parents around their respite needs

Key Points of our Report

We are looking for responses to this report from

For any further information or queries please contact:

Greg Ivison: Play Inclusion Coordinator,
Greg.Ivison@Mencaphf.org.uk
0208 748 5168
Nandini Ganesh: Parentsactive Coordinator
Nandini.Ganesh@Mencaphf.org.uk
0208 748 5168

Parks

“Public open spaces are central features of local community life across the UK, making a significant contribution to people’s wellbeing and quality of life...Many people, including disabled people, are often excluded from enjoying the use and benefits of such spaces because of a lack of planning or awareness of their needs.” (Sensory Trust)

Over the past two years Hammersmith and Fulham Council has invested heavily in its parks and we have seen some benefits to park users with disabilities, this has come in the form of improved equipment, innovative approaches to procurement and design and better consultation with parents of children with disabilities. However the spending has been very disproportionate overall with several million pounds spent on certain parks and only one type of truly accessible equipment put in place.

The survey showed us that the most popular park was Ravenscourt Park; the main reasons given were the fact that it had large spaces for children and that it was local to them.

The majority wanted more sensory equipment and sand & water play. However a small but significant number of comments showed that parents wanted more suitable equipment for their child’s needs such as wheelchair swings and better fencing around play areas to provide a safer environment. The need for equipment that is accessible for wheelchair users should not be underestimated as these children and their families can be some of the most isolated due to their disability. Article 31 of the UN Convention on the Rights of the Child states that “Every child is entitled to rest and play and to have the chance to join in a wide range of activities including cultural and artistic activities”.

Of the parents who did not use parks the two main reasons given were lack of suitable equipment and lack of secure spaces for their child.

Incontinence/wheelchair users are often unable to use parks due to the lack of a ‘Changing Places’ toilet (see glossary pg.13). Those who do use the parks have to be very careful with timing and often spend only short periods in the parks as they have to return home to take their child to the toilet.

Parentsactive involvement in Park development

Parentsactive have taken part in consultation events on the development of Brook Green Park and liaised with the architect over a possibility of a Changing Places Toilet. The friends of Brook Green agreed to this proposal and follow up action is required

Parentsactive is fundraising with Ravenscourt Park School to procure inclusive equipment in Ravenscourt Park. The unused wheelchair roundabout at the old Haven site will be relocated to this park

Parentsactive is being consulted on the development of Wormholt Park to ensure that it will be an exemplar in terms of disability. These meetings resulted in a Changing Places Toilet being built in the New Collaborative Care Centre with access to park users when the centre is closed, by using a radar key

Parentsactive continues its campaign to ensure every park is accessible to disabled children and will work with the parks department to do this.

Current facilities

An audit carried out by H& F Parks in December 2012 showed that of 26 parks only 7 did not have a piece of equipment classed as accessible. This however paints an unrealistic picture as only 4 parks have equipment that is wheelchair compliant (mainly roundabouts). Also some of the equipment that is classified as accessible can be very difficult for children with mobility issues to use, such as nest swings which are only suitable if supplied with a hoist. Roundabouts, sand tables, sound bars and play panels are some of the suitable equipment for wheelchair users currently in place and it is important that wheelchair accessible equipment continues to be procured to allow for a variety of play experiences for these children.

Conclusions

Parents are encouraged by the Parks Department consultation on Wormholt Park and feel that some of their recommendations are being implemented. We hope that wheelchair accessible equipment continues to be procured and that the diversity of equipment that we are starting to see will continue.

We sincerely hope that the merging of H& F Parks Services with RBKC Parks Services will provide greater access to facilities and increase efficiencies to allow them to improve facilities quicker and more cost effectively.

Concerns & Recommendations

If you have any specific questions/concerns you can contact the Parks Department at:
email: parks@lbhf.gov.uk
tel: 0208 748 3020

Play & Respite

“Play is critically important to children’s development and learning. Through play children learn that which cannot be taught - that which can only be learnt through experience, such as self-confidence and resilience. A child’s development, and their future capacity as an adult, will be affected by their access to a range of play opportunities.” (The Play Principles, signed by Hammersmith and Fulham Council)

The focus of the survey was to assess what respite people were receiving and what they would like to see in a proposed centre for children with disabilities. Of the respondents 73% felt they did not receive adequate respite. This high percentage is due to several factors including limited access to respite provision, especially for children needing 1-1 support, care packages being cut for many families and the lack of inclusive providers of play and leisure being commissioned.

Since February of this year, the Disabled Children’s Team have begun implementing new guidelines for the provision of respite care. This has resulted in many disabled children’s care packages being cut, often by more than half, very quickly and with no alternative provision put in place. This is a huge concern for parents as they need support to recharge themselves to be able to care appropriately for their child and other family members and without this respite there is the potential for families to reach breaking point* We are seeing directly how the well-being of families is being negatively affected by these cuts especially for those families with children with complex needs.

The play inclusion coordinator for Hammersmith and Fulham Mencap has set up the play consortium, an organisation of local play and youth providers to discuss how they can offer a holistic approach to play across the borough to ensure that every child has access to play. This will need support from the council particularly around the commissioning of services to ensure that all play/leisure provision has a duty to be actively inclusive of children and young people with disabilities.

Sessional carers and direct payments

There are currently 55 sessional carers linked to 57 children. The carers take the children and young people out into the community and engage in a range of local activities (swimming, bowling, football, cinema, museums and parks) and also use the Short Breaks Activity Centre some of the carers also accompany children to play schemes as one to one workers where necessary

Concerns and Recommendation

Response to above from April Esteras (Manager- Disabled Children Short Breaks Carers Scheme)

“Just to clarify points raised in relation to sessional carers, when a referral is made to the Short Breaks team if we do not have an available carer the family's social worker will explore other appropriate options (i.e. Direct Payments, Agency carers etc.). We hold a small waiting list that is reviewed monthly and if a suitable link is unlikely to become available the children are removed from the waiting list and the social worker is informed and explores other types of short break with the family. The service is currently under review and DCT is being re-organised within the borough and all sessional carer recruitment has been frozen for the foreseeable future.”

The Haven

The Haven offers overnight, weekend and after school respite for children aged 9-18 with complex needs. The service is hugely appreciated by parents, however with recent cuts in packages; the hours allotted to access this vital provision may not be consistent with the needs of the children. Parents hope the capacity may be increased with the relocation of Queensmill School to the old Haven premises in the near future and the proposed respite centre for autistic children within the school. Spaces allocated to K&C children has always been a concern as provision for disabled children is not shared between the two boroughs. Some parents would like the Haven to be open to children to the age of 19 to be consistent with the age they leave school.

School Clubs and Children centres

Parents generally welcome after school clubs as they see it as a safe and logical place for their children to play, Children Centres are popular but need to ensure they are able to support families with disabled children

Jack Tizard is now offering more sessions during the summer holidays, particular hydrotherapy and sensory provision. This summer they offered three weeks of sessions both morning and afternoon for children with disabilities and their siblings. The sessions were Stay and Play so parents were not receiving respite however it offered a great opportunity for parents to play with their children and for the children to try new activities. The All Ability Youth Club at Cambridge school for 11-19yr olds runs every Saturday during term-time and has done since early June 2013. The group is a mixture of boys and girls, with most attending Cambridge School and nearby Wood Lane High School. The Youth Club has been a great success so far and has encouraged the young people to take part in the SAFE Holiday programme and other Family and Community Engaging activities run by Phoenix High School. This model should be replicated across the borough for both 11-19 year olds and under 11s.

The Masbro Children’s Centre also offers a range of activities for children with disabilities such as Sparkle time and Speech Therapy sessions. Some holiday provisions are also offered. There are also after school clubs run by parents of disabled children at the Cathnor Park Centre. Other children centres should also offer more inclusive activities for children with disabilities as early intervention and inclusion is crucial for these children

Concerns and recommendations

Voluntary Sector

These schemes are welcomed by disabled children and their parents as the majority are open access and therefore without the need for social services involvement. However these services are vulnerable as there is no consistency due to funding and other issues. These services are crucial for disabled children and their families. Some of the schemes used by families are:
HAFAD Youth scheme for 11 - 25 year olds offering after school and holiday provision
Safety Net Youth for 14 - 21 year olds
Play Inclusion Coordinator at H& F Mencap offering play sessions for disabled children and their siblings
Green House swimming for 9 years and above
Music House for children — Music sessions for varied age groups, currently 12-20
Antony Lillis Play scheme for complex needs children run by Hammersmith & Fulham Play Association

“Voluntary sector children and youth providers need to combine their expertise and coordinate better to ensure that there is not a duplication of offers and that a high quality, diverse provision exists that meets the needs of disabled children and young disabled people. This approach to delivery would also offer parents and carers more choice and opportunity”. John MacNeely, Youth Service Manager HAFAD

Proposed Centre

As part of the Triborough reorganisation, the Head of Disabled Children’s Services in Kensington and Chelsea was appointed to be the Bi-borough Head of Disabled Children’s Services for both RBKC and H& F. He is keen to develop a disabled children’s centre in Hammersmith and Fulham. This proposed new centre has become the focus for the Short Breaks Committee and Parentsactive representatives have visited other short break centres to look at examples of good practice.

The St Quintin Centre in Kensington and Chelsea has always been envied by parents in Hammersmith and Fulham who lack a specific centre to take their child with disabilities. Parentsactive have been eager to see a similar centre developed in Hammersmith and Fulham particularly since the loss of The Distillery Centre and Fulham Palace Playground.

It is still unclear how the site may be developed in Hammersmith and Fulham and a timeframe has not been given.

Examples of good practice

Parentsactive representatives visited the St Quintin Centre in Kensington and Chelsea, the Full of Life respite centre in Kensington and Chelsea, the Moor Lane Centre in Chessington, the Ade Adepitan Centre in Brent, Thames Valley Adventure Playground and Redlees Adventure Playground. As a result of these visits the representatives felt that the following elements should be included in a centre in Hammersmith and Fulham

  • A core offer of services without the need for social services involvement.
  • An inclusion scheme for all children.
  • Suitable equipment and spaces including accessible kitchen, ceiling tracker hoist and changing places toilet, wheelchair swing, inclusive see saw and a wheel chair accessible trampoline
  • Appropriate outdoor space.
  • Facilities for complex needs children with adequate space for movement
  • A parent and child led centre with parents to sit on the management committee.
  • Training and meeting room

Actions

  • The council need to offer a wider choice of play provision for all disabled children.
  • Improve commissioning by introducing a duty on providers to be actively inclusive of children with disabilities and to make sure all staff has had disability awareness training.
  • To give a timeframe and a plan for a centre suitable for all disabled children with proper facilities,
  • There needs to be transparent eligibility criteria and consistent provision. —
  • To take the needs of disabled children into consideration to ensure that ALL children can enjoy the full benefits of the park equally.

In conclusion

Although we have seen improvements and a greater willingness to involve parents in the development of services there is much more to be done to ensure that disabled children in Hammersmith and Fulham have equal access to play and parks. There is still a huge gulf in provision between disabled children and their non-disabled peers.

These changes are crucial in the light of the new developments in Special Education Needs where complex needs children are given a plan with equal input to Education, Health and Social Care. The Joint Plan and the Local Offer have to specify the range of respite facilities on offer and the eligibility criteria to access them. The Social Care element of the Local Offer has to be fairly consistent across the 3 Boroughs which emphasises the need for a centre along the lines of K& C.

Statement from Richard Holden, Bi-borough head of disabled children’s Services

Review of care packages

The review of care packages is almost complete with over 150 cases now reviewed. The guidance has resulted in significantly better social work reports to the panel with much clearer information about the level of needs and better information about how the current care packages have been used by families. All parents now get a letter outlining their package, packages are now agreed for a year, and the appeals process is in place.

Data Management Processes

As part of the groundwork for greater fairness and efficiency we have been working on improvements to our data collection and management processes. This will enable us to identify exactly what types of services we are providing at what level for what children and allows us to better co-ordinate the different services on offer.

Recommendations from Direct Payments Review

The need to clarify the process and everyone's individual responsibilities within the process therefore we are monitoring Direct Payments far more closely, are in the process of finalising guidance for users and professionals, and are preparing for the forthcoming personalisation agenda under the new Children and Families Bill.

Review of the Short Breaks Service (Mary Kuhn review)

The service is under review at the moment to maximise user potential, this will ensure well rounded service to users as well as ensure cuts in staffing. The review states that the service could be both streamlined and take responsibility for the agreement co-ordination and monitoring of care packages. There was a concern about the lack of variety of services on offer to users, and the emphasis on 1:1 care which she felt risked promoting a dependency model. An integrated model of short breaks is being explored.

The Haven

The future of the Haven is being reviewed to provide effective overnight respite to those who need it the most, with costs being balanced to maximise its use as a day care centre and also to look into the possibility of extending the age range to 19. We endorse the parent's views for the need for a centre and the usage of the Haven for this purpose may be explored carefully

The Tri Borough Review

It has been agreed that it is not possible to establish a one size fits all Tri Borough Structure and that within a Tri borough umbrella each borough is to develop its own solutions in terms of establishing:

  • A user friendly means of entering the services,
  • Assessment processes proportionate to any service on offer,
  • Services which empower rather than promote dependence
  • Services which enable savings to be made by preventing escalation up the hierarchy of services.

Local aspirations

We hope to achieve a user friendly entry into the service, using a disability oriented assessment and staffed by specially trained key workers/social care workers providing, information, advice & signposting, care package management, benefits advice, inclusion work, and Direct Payments advice. This would be more user friendly and more effective to provide than the current arrangements where all services can only be accessed through a full social work assessment.

The development of a range of managed and co-ordinated short breaks services targeted and specialist, provided both in house and by the voluntary sector including, sessional carers, after school and Saturday activities, youth activities, early years groups/stay and play, training and support groups for parents and holidays away.

Similarly a program to support disabled children to be provided for within mainstream services without always having a 1:1 should also provide better, local, services for families.

GLOSSARY

Core Offer:

A core offer should offer services for children, siblings and parents/carers. Services could include: Access to a social worker for short term work or information, access to Key worker for parents who need help in accessing services for their children, playgroups, stay and play, access to the Sensory Toy Library, Afterschool activities, a sibling club, social skills group, family days out in school holidays, activity sessions in School Holidays, Sunday activities, School Holiday stay and play, parent's courses, Youth Clubs, Fathers Group, coffee mornings, Parents Committee.

Changing Places Toilet

From http://www.changing-places.org/
Each Changing Places toilet provides:

photo
  1. A height adjustable changing bench.
  2. A tracking hoist system, or mobile hoist if this is not possible.
  3. There should be adequate space.
  4. A centrally placed toilet with room either side for the carers.
  5. A screen or curtain.
  6. Wide tear off paper roll to cover the bench.
  7. A large waste bin for disposable pads.
  8. A non-slip floor.

APPENDIX 1:

graphs

APPENDIX 2:

graphs graphs

ACKNOWLEDGEMENTS

Parentsactive owe a debt of gratitude to all research participants, in particular to all the parents of disabled children who have given so generously of their time and shared with us their experiences. We would like to thank all the organisations who helped us in the research including the London Borough of Hammersmith and Fulham Disabled Children’s Team and Parks Team.

We are indebted to Hammersmith and Fulham Mencap for aiding us in the research and with the compiling of the report.

We would like to thank other organisations for providing information for the report including HAFAD, Hammersmith and Fulham Play Association, Greenhouse Swimming Club, Music House, Phoenix High School, Jack Tizard School and Cambridge School.

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