What Life Was Like When Parity’s Day Services Weren’t Open
The Covid lockdown resulted in the temporary closure of our day services and our students were unable to access them between March 24th and August 3rd 2020. We surveyed families and carers in September 2020 about what it was like for them.
87% said the person was affected adversely by the withdrawal of the service.
60% reported deterioration in the person’s physical ability resulting from the lack of activity and exercise programmes.
47% reported associated changes in the person’s behaviour. In each case, depression was cited as an issue.
“My daughter became anxious, stopped eating and drinking due to stress and change in her routine. This has lead to significant weight loss. She is less confident with people since not being able to access Parity due to lack of contact with others. She began having different behavioural issues and is more emotional since the break from Parity. Routine, interaction and having meaningful activities are very important to my daughter. Since restricted access to Parity my daughter can be a lot more challenging.”
“My son can crawl, but during this period seemed to get quite lazy and hardly crawled at all. When we tried to do leg/knee stretches with him he was very uncooperative and the concern was that this would have a negative impact on his already limited mobility. At Parity, my son used the Motomed [accessible bike] regularly, which helped him physically and emotionally. During lockdown we didn’t have access to any specialist equipment. My son also must have missed his regular swimming trips with Parity, something that he absolutely loves which also supports his physical and mental health. Meeting all of my son’s care needs was physically exhausting and manual handling certainly took its toll on our physical health (pulled muscles, bad backs etc.) We also had huge concerns about how we would cope if my son or my husband or I became ill.”
Negative effects on students and families/carers in terms of mental or emotional health:
Students: Could not understand why daily life had changed, only had family members for company, experienced listlessness and loss of confidence, missed friends.
Carers: Were not able to explain situation to the student, student needed constant stimulation and 24/7 care, experienced aggression from student, no respite available.
Both: Experienced boredom, high levels of stress, anxiety, depression.
Negative effects on students and families/carers in terms of physical health:
Students: Much less space at home for walking or standing work, lack of activity and exercise including stretches, limbs seizing up, stiffness, muscle spasms, weight loss and weight gain, discomfort when in wheelchair, grinding teeth.
Carers: Severe strain on back and other muscles from increased moving and handling.
For those with a health condition, lack of respite and rest worsened the symptoms.
Additional care responsibilities taken on:
24/7 need, personal care, showering, medication, food and drink, repairing wheelchair, maintaining all the adaptions. Constant reassurance and attention.
One parent had a very sick husband to care for as well as the student.
A regression to previous violent behaviour:
During service closure, one student developed violent challenging behaviour. This was a recurrence of behaviour that had been previously successfully addressed.
This case was extremely disturbing because the carers could not recruit any additional care help – the student was considered too challenging by potential care service providers.
The Care Act 2014
Care Act 2014 legislation includes the rights of people with learning disabilities and/or autism, and those of their family carers. Parity’s services meet the needs of people with profound and multiple disabilities in line with the requirements of the Care Act.
Why Aren’t There More Specialist Services?
For those with no experience of meeting people with profound disabilities, they find the needs difficult to understand.
- Typically the people using our services have significant physical and cognitive disabilities.
- They may have epilepsy and sensory impairments.
- Most do not use speech and communicate by alternative or augmentative means.
- They require substantial support in most aspects of day-to-day living, including expressing themselves, personal care, eating and drinking, and moving around.
- Staff need specialist training to provide the essential level of care and support.
- Staff must administer medication and be able to cater for acute medical care requirements or issues around a student’s internal organs and systems.
- Suitable changing facilities must be available and staff must safely manage required processes around eating and drinking, such as feeding tubes.
- Without regular exercise, people lose muscle and flexibility, the ability to move and reach, and can suffer great pain and discomfort.
Due to advances in medical care, more children with severe disabilities are surviving into adulthood. Yet local authorities still struggle to recognise and address their very individual needs. As a result, though the need for services increases year on year, specialist providers are still rare.
A traditional day service will usually have a set programme of activities or outings, eg music or art in the morning and bowling or cinema in the afternoon. They are not flexible to react to the person’s needs on any day and at any time.
Though staff at a traditional service may have the training to work with people with learning disabilities, the majority do not have the specialist training to work with those with multiple or profound disabilities.
Someone who goes to activities in the community accompanied by a support worker is unlikely to receive consistent support. The opportunity to develop a relationship and have the necessary communication and understanding is not there. The result can be a situation where people with complex needs are mainly uninvolved and activities largely meaningless.
While simply going out with a support worker may be valid for certain people at certain times, there are still issues around accessible transport, accessible changing areas for personal care and participation in the activities themselves.
The Wellbeing of Families and Carers
Through specialist services, families and carers receive respite. Parents report that they are less strained physically or emotionally, more able to spend time with other family members and, in some cases, more able to earn income.