Facing an uncertain future...

My first blog about the Coronavirus lockdown was about the unique challenges faced by people with learning disabilities during these unprecedented times. It explored the various ways my charity, The Music Man Project, and our regional teaching centres were remotely supporting students, families, carers and schools (see Music Man in Lockdown).

While the debate rages on about when children should return to English schools, huge uncertainty remains regarding the plight of adults with learning disabilities. I recently read that despite a 175% rise in their deaths, COVID-19 tests are not being given to people with learning disabilities living in residential care. This is truly shocking. No wonder they fear they will be at the end of the queue for a ventilator or not treated at all because of their disabilities.

20 years of experience has taught me that the enemy of people with learning disabilities is uncertainty. My students miss the certainty of routine, reassurance, familiarity, engagement and stimulation. Many do not understand what pandemic, social distancing or lockdown mean. Their social skills, self-care, self-value and mental health will all suffer while they are trapped inside their homes. With a learning age already far lower than their actual age, a lifetime of education and development could be reversed in a matter of weeks. I fear that, once again, those people that I care so much about will be a forgotten society, the last on the list.

Their unique predicament can be summarised by the following three slogans that you will never hear from a Government minister at the daily Coronavirus briefing:

Back of medical queue

A future of uncertainty and isolation

Reversing years of progress

While mainstream society plans their return to normality, adults with learning disabilities will be among the last to be released from lockdown and many will find it impossible to adapt to such a changed way of life immediately after the crisis is over.

All of us have a responsibility to prevent a learning disability mental health calamity during and immediately after the COVID-19 crisis.

Music Man Project COVID-19 Response Funding

Music-making plays a huge role in the lives of people with learning disabilities. It helps self-expression, communication and emotional control. It is truly motivational, working on a deeper level and often bypassing completely the part of the brain which has the learning disability. PhD research at the Royal College of Music by Natalie Bradford is providing evidence for this for adults who follow our teaching program.

I have applied for COVID-19 crisis funding to help me and The Music Man Project do more. The money will pay for musical instruments, equipment and more online services to support and engage neglected people with learning disabilities during and after the Coronavirus Pandemic. I believe The Music Man Project has the potential to bring about real change at a time of real crisis.

Our charity is not a frontline service, but our work could be vital in preventing a long-term health disaster among this difficult-to-reach, high-risk community. Greater access to improved online resources, and the joy of receiving and playing new musical instruments at home would give many vulnerable people life-enhancing opportunity and hope. Our existing students usually share instruments and they sing in every session. Even after 2-metre social distancing has been relaxed, both of these musical activities will be banned because of their potential to spread the virus. New instruments would enable everyone to practice at home and those who return to formal lessons in the community would no longer need to share them with other students. We could even present a concert in which our growing community emerge from lockdown to join together and perform the music we have taught them during the crisis. Life changing and inspirational for all, the scheme could show that something good can come from the COVID-19 crisis.

We have the opportunity to shape well-being responses to future pandemics or similar global crisis for the most vulnerable. We could help change attitudes so that no communities are left behind, regardless of how hard they are to reach or how difficult they are to help.

But this is not going to be easy…

Historically, the first services to be cut in times of trouble are the Arts. This is ludicrous of course but that topic deserves a blog entirely on its own. For my 2019 Churchill Fellowship I searched the world to find examples of effective music education and performance for people with learning disabilities and discovered that New York was an epicentre of innovation in my field. At Kean University in New Jersey I visited a beautiful program which enabled adults with special needs to rehearse and perform with university music students. Kean provided access to rehearsal studios, instruments and equipment and hosted annual concerts. The regular rehearsals and performances on campus were life-changing for the adults with disabilities, making them feel like university undergraduates. For Kean, the project supported research into the impact of popular music instruction on the musical growth and quality of life of special-needs adults. The effect on the Special Needs Educators of tomorrow was arguably the most important outcome. The collaboration provided a platform for young people with no connection to the world of disability to give back to society and to improve themselves by helping others.

In both my blog and final report, I wrote:

“The level of funding, duration, commitment and direct teaching from faculty staff and students distinguishes the Kean/CAU collaboration as a world-leading example of the transformative potential of FE/SEN partnerships at an organisational level. In 2016 Dr Schraer-Joiner was honoured in a joint resolution by the Senate and General Assembly of New Jersey for her work in this field. She was also the recipient of the CAU Community Integration Award.”

The inspirational Kean University/CAU collaboration - before it was cut by the university

Within hours of reading that COVID-19 tests were to be withheld from people with learning disabilities, I received a soul-destroying message from Dr Schraer-Joiner. Her world-leading programme is to be eliminated, along with the entire Music Conservatory at Kean University. The reason given was 'cutbacks related to COVID-19'. A fabulous weekly activity which engaged, educated and enlightened both mainstream and learning-disabled adults in equal measure will cease forever. The move will be especially devastating for those members with disabilities.

My global campaign for accessible music education and inspirational performance opportunities for all must temporarily transform into a COVID-19 Campaign. For the sake of the physical and mental well-being of 1.5 million people living with learning disabilities we must all now:

• Raise awareness about the plight of people with learning disabilities during the pandemic, fighting for equal rights to testing and treatment.

• Value, educate and engage through online services and provide instruments and resources during the lockdown so they can continue to learn at home.

• Provide individual instruments and resources immediately after the lockdown to facilitate their safe and smooth return to community-based activities.

• Protect the future of the Arts at a time when they are needed to most.

We must act now to reach vulnerable people with learning disabilities who are at greater risk of death from the virus, at greater risk of physical and mental harm and at greater risk of being ignored – AGAIN!