Generation of disabled children and young people’s voices unheard

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Include Me TOO organised a Roundtable event at the House of Lords as a generation of Black, Asian, Ethnic Minority and marginalised communities disabled children, young people and their family’s needs have continued to be overlooked and unmet.

Baroness Uddin chaired the meeting and is a member of the All Party Parliamentary Group on Disability and All Party Parliamentary Group on Autism. Lord Chris Holmes, Chair of the Disability Committee at the Equality and Human Rights Commission and an Ambassador of Include Me TOO supported the event and debate.

The roundtable discussion is a call for action asking the government to re-address the balance of Equality, Race and Disability as a generation of disabled children, young people and their family’s needs have been overlooked.

Parmi Dheensa Include Me TOO’s Executive Director led the discussions, sharing evidence and concerns highlighting the failings and missed opportunities of the SEND reforms in relation to Black, Asian and Minority Ethnic (BAME) disabled children, young people (0-25 years) and their families.

Julie J Charles CEO of Equalities National Council (ENC) shared equal concerns regarding the transition of BAME disabled young people and barriers experienced by them post 25 years, including the cycle of poor outcomes and missed opportunities.

Since 2007, the Government has made a commitment to improve the support made available to disabled children, young people and their families. The government programmes have included ‘Aiming High for Disabled Children, increasing Short Breaks for disabled children and their families, Parent/Carer forums increasing parental participation and having a voice to influence local services and national policy,  DCATCH, Early Support and Achievement for All to name a few.

‘Over the years Include Me TOO have continued highlighting the reality of BAME disabled children, young people and their families with Ministers, government officials in Department for Education, Department of Health and Department of Work and Pensions. The charity has been representatives and advisors on several national steering groups advising on race equality and disability.

Even though all parties acknowledge the barriers and challenges BAME disabled children and their families’ experience, nevertheless there has been no commitment from them to address these matters and improve these family’s experiences. ‘There are no additional funds’ is the response we have become too familiar with. The solutions and good practice we share with them to meet diverse needs and inclusion seem to get lost in the wider picture of SEND delivery.

Over the last decade there has been substantial resources over £1.5 billion made available to improve services and support to disabled children and their families. In the wider scheme this may not seem a large amount for all the support that is needed but these amounts are the largest resources made to date.

Furthermore, this presented a possible opportunity to have support and to allocate a fraction at least of the budgets to readdress the balance of inequalities experienced by disadvantaged groups. However no  resources or support were allocated to instigate positive change and commitment to ensure BAME disabled children, young people and their families did not continue to be disadvantaged and excluded.

No resources have been made available to support the voluntary structure we have in the BAME community, the peer support, community outreach which have proven to be successful in reaching and engaging diverse families and communities.

There is no BAME national strategic voice or representation from any of the Government funded SEND strategic partners and advisors. Include Me TOO BAME national network which has groups and parents/carers members is that voice. Again on several occasions we have suggested partnership working,  for this network to be supported,  resourced and have representation at national strategic level around the discussion tables to represent the issues which matter to BAME disabled children and families.

Sadly the SEND sector seems to have become monopolised with charities who have grown by not only resources but also influence and the Ministers and politicians are left even further out of touch with the matters at community grassroots as voices go unheard.

Ironically it has only been a few months since our nation witnessed and listened to our leading politicians highlighting why we as a country and they as our representatives needed a place around the table to ensure are interests were represented.

There is no less importance in the same request we are making for BAME disabled children, young people and their families as the bias culture and practice needs to change to enable real progress in this area, Without equality the disparities will continue’.  Parmi Dheensa Include Me TOO Executive Director shared an overview of the issues raised at the House of Lords Roundtable Event by Include Me TOO.

The round table had representation from various organisations including those who have been key in SEND reform such as DfE, NHS England and Council for Disabled Children.

It is very concerning that to date the equality duties have not been fully implemented regardless of the concerns Include Me TOO have continued to highlight over the last decade to government delivery partners requesting them to implement positive action with resources. This would have supported equality duties to underpin equality to information, access and advice to meet the diverse needs and inclusion of our diverse SEND population.

Whilst the SEND reforms promote the importance and need to place parents, carers and young people at the heart of the decision making. There has been limited provisions for BAME parents and carers to be appropriately supported to be able to do so and to contribute and inform the decision making processes and assessments which includes their child’s Education, Health and Care Plan.

Many families are not aware of what the local offer is and the one stop point of reference mainly are on websites may be cost effective for local authorities but certainly not accessible for many families. Being able to fully participate and make informed choices are further hindered with none or limited support to parents and carers who have literacy difficulties or whose first language is not English.

The gap of inequalities has increased over the recent years where many of the parent carer forums and parent carer representation on regional and national level are predominately white British parent and carers.

The parent carer forums have been championed, developed and lead by SEND strategic partners and local authorities, a ‘one fits all’ approach structure. Another missed opportunity and undervaluing the already established community networks for BAME parents and carers which offered a cultural holistic model of engagement and participation.

During 2013 Include Me TOO conducting a survey of parent and carer forums and facilitated several BAME parent and carer focus groups across England regarding participation and representation. 48 parent and carer forums responded and both the survey findings and responses from the community consultations were shared with national SEND strategic partners tasked with supporting parent participation.

The findings clearly evidenced low levels of BAME representation and participation within parent forums and the community support model many BAME parents and carers preferred. The lack of commitment to support and acknowledge how these families wished to participate and represent was disappointing.

Parent Carer Forums are one mechanism for representation, other local support groups and networks should also be valued as sources of local knowledge and advisors. Currently the experiences of BAME community and voluntary sector has been a point of reference to assist in accessing BAME families and communities. The interaction is short term and more than often tokenistic and consultative with no real investment.

How do we ensure another generation will not have their needs overlooked and ensure they too can have a chance under the SEND reforms for greater choice and control over their support?  The past decade has many lessons of how not to exclude, these will be forming the actions we are asking the Government to consider to re address the balance of Equality, Race and Disability and ensure another generation’s needs are not overlooked.

Chris Holmes, EHRC Disability Commissioner said: ‘Public authorities need to place BAME disabled children, young people and their families at the centre of their planning in order to readdress the intersectional inequalities they experience. Without this, we risk another generation of young BAME disabled people being left on the sidelines of society.’

‘This roundtable has further highlighted the need for inclusive educational approaches to enable of BAME disabled children to fulfil their potential, and the need for the involvement of their families in decision making processes to ensure that their needs are represented and supported.’

Baroness Uddin said: ‘Include Me TOO and Equality National Council eloquently presented the meeting highlighting the many remaining gaps in the Governments’ drive to improving the support to disabled children and families during the round table with many participants sharing their personal and professional experiences about the continuing inequalities prevailing for BAME children, adults and their families.

Many respected organisations have cited the’ generation overlooked’ whose needs have not been supported and whose voices and concerns have not been listened to and valued. During the round table discussion it was made clear that BAME families are not being afforded the opportunity to be involved within any current structures of consultation and decision making such as the Parent Forums.

The government and their advisors must meet their statutory, moral and legal obligation to ensure justice and equality to all. There remain a massive disparity in assessment, provisions and support, in particular during transition period.  I am confident that the leading BAME disability organisations Include Me TOO and Equality National Council will continue to make an enormous difference to the BAME families and that the Government undertake to heed their advice with serious intent and inclusion’.

Dr Omar Khan, Director, Runnymede Trust said: ‘Runnymede and other research has found that BME disabled children and families still face greater barriers in accessing services and support. We welcome Include Me TOO’s important focus on this neglected issue, and expect public agencies to respond by better supporting disabled BME children and their families to live more secure, independent lives.’

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