Mencap - Parentsactive

Service name: Parentsactive and Parent/Carer Advocacy

Service description

HF Mencap provide a network, forum, training and workshops for parents and carers of disabled children. HF Mencap provides advocacy for parents/carers of disabled children.

Funded until:

31st March 2021

Annual funding level:


Annual performance December 2014 to December 2015

Number of residents supported       
Target: 171                   
Actual: 223 (119 parents and 104 children & young people)

Use of volunteers:

Number of volunteers involved: 31
Number of volunteer hours delivered: 699
Value of volunteer hours provided: £6,567

Outcomes being achieved

  • 119 local parents of disabled children have been supported to access network activities; forums, training and attending external committees/meetings.  All parents have reported that they feel more able to cope with their circumstances and their child’s disability as a result of accessing the service.
  • Professionals from 22 other services have provided information to parents at organised forums run by Parentsactive in order to help parents understand their rights as Carers, to help parents speak effectively at meetings and to help parents teach their children about relationships, cope with puberty, how to keep safe online etc.
  • 41 individuals have been supported by the advocate on issues which included housing, transition, education, Social care and debt and benefits.
  • Parents through Parentsactive have been supported to contribute to improvements in access of public spaces including having a wheelchair swing installed at Wormholt Park.  A parent is also now part of the Westfield Access committee.
  • Two Parents of complex needs children from Parentsactive are part of the Learning Disability Board and Transition Board at Chelsea and Westminster hospital and have successfully campaigned for a Changing Place toilet in the hospital

Local parent – “Parents active is an amazing source of information and support for parents at a time of great anxiety, uncertainty and ignorance. Your recent workshop on EHC plans was a masterclass in the provision of clear accurate and focused information. I am incredibly grateful to you for offering this service. Ultimately the person to benefit most from your help is my daughter.”

Funding raised

£15,000 from external fundraising invested back into the service.

Comments, achievements and future plans for the service

A major concern flagged by the advocate was that since the changes in the housing allocation; many families found the new the application form inappropriate and extremely difficult to complete.  The Advocate and Early Support Keyworker made many suggestions to the LBHF Housing Department for its improvement and as a result of this the form is now much clearer and easier to complete. They will continue to work with Housing with regard to improving the medical form.

Their representations at the Housing PAC meetings have also proved very useful as their concerns around eligibility for the housing register have been acted on as the current consultation on the housing allocation scheme includes their desired changes.

The local authority has issued several draft policies which Parents active have been asked to comment on, including a travel assistance policy and a post 19 Eligibility criteria for an EHC plan.

Many parents have stated that there are no suitable colleges or supported housing for disabled young adults, or residential places for young people with complex needs in the borough. Parentsactive have attended several meetings with carers and housing officers to address these issues and the advocate arranged for a parent of a child with complex needs to meet with Commissioners of Adult Social Care and Health to explore the possibility of liaising with a private organisation to commission a residential home for young people with complex needs nearer to this borough as well as explore other options for supported living.

Parentsactive is working with the council on the local offer and have periodic meetings with the local offer lead to contribute to the local offer website as well as continue to work closely with the council as part of the Parents Reference Group to contribute to the implementation of the Children and Families Act. Parentsactive Coordinator and the advocate contribute to the personal budgets works stream and have identified 2 families who are currently piloting the personal budget scheme for incontinence pads.

The Parentsactive Coordinator as well as the Advocate sit on the Transport working party along with councillors, headteachers and leads from the council and helped improve passenger transport for children and young adults with special needs.

The Parentsactive Coordinator sits on the Children Education Policy and Accountability Committee as a non-voting member to comment on issues relating to SEN and disability as well as representatives from Parentsactive sits on the taskforce on Transitions initiated by the councillors to improve the experience of Transitions from Children to Adult Social Care.

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