Dyskinetic Cerebral Palsy and Financial Support for Children and Their Carers

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Dyskinetic Cerebral Palsy and Financial Support for Children and Their Carers – Disability Living Allowance

Dyskinetic Cerebral Palsy (CP) is a type of cerebral palsy that affects movement control. Individuals with this condition often experience involuntary, slow, writhing movements or rapid, jerky motions, primarily in their hands, feet, arms, or legs. It can also impact their facial muscles, affecting speech and eating. For children diagnosed with dyskinetic cerebral palsy, the condition presents unique challenges that necessitate constant care and specialized support, both physically and financially.

Understanding PIP Eligibility

Personal Independence Payment (PIP) is a benefit available to individuals in the UK to help with the additional costs of living with a long-term illness or disability. PIP is intended for people aged 16 and over who have difficulty with daily activities or mobility due to a physical or mental health condition. Since PIP is only available from the age of 16, children younger than that cannot receive this benefit. However, they may be eligible for Disability Living Allowance (DLA) instead.

Financial Help for Carers and Parents of Children with Dyskinetic Cerebral Palsy

When it comes to younger children, carers and parents of children with dyskinetic cerebral palsy may qualify for financial support through Disability Living Allowance (DLA), which helps cover the extra costs associated with caring for a disabled child under the age of 16. DLA consists of two components:

• Care Component: Paid if the child needs help with personal care or supervision.
• Mobility Component: Paid if the child has difficulty walking or needs guidance when outdoors.

Depending on the severity of the child’s condition and their specific needs, families may be eligible for either or both components of DLA.

Once the child turns 16, they would transition from DLA to PIP, provided they continue to meet the eligibility criteria. PIP, like DLA, is divided into two components: the daily living component and the mobility component, which help cover the costs of personal care needs and mobility challenges, respectively.

Carer’s Allowance

Parents or carers of a child with dyskinetic cerebral palsy may also qualify for Carer’s Allowance, a benefit aimed at those providing significant care for someone with a disability. The eligibility criteria include:

• Providing care for at least 35 hours a week.
• The person being cared for must be receiving DLA (care component at the middle or highest rate) or PIP (daily living component).

This allowance helps provide financial relief for carers, acknowledging the critical role they play in supporting the individual’s daily life and medical needs.

Other Financial Support

Families may also be entitled to other benefits such as:

• Universal Credit: If their household income is low.
• Child Tax Credit: An additional benefit for families with children.
• Income Support: For those who cannot work due to their caring responsibilities.

Challenges Faced by Individuals with Dyskinetic Cerebral Palsy Compared to Able-Bodied Individuals

Here is a list of things a person with Dyskinetic Cerebral Palsy may struggle with compared to an able-bodied person:

1. Fine Motor Skills: Difficulty performing tasks that require precise hand movements, such as writing, buttoning clothes, or using utensils.
2. Speech: Struggles with clear speech due to impaired control of facial and vocal muscles, making communication challenging.
3. Walking and Balance: Trouble walking or maintaining balance due to involuntary muscle movements and lack of coordination.
4. Grasping Objects: Difficulty holding and controlling objects, such as gripping a cup or handling small items.
5. Feeding and Swallowing: Challenges in feeding themselves or swallowing food, leading to potential difficulties with nutrition.
6. Self-care Activities: Tasks like dressing, grooming, and bathing may require assistance due to limited control over limbs and hands.
7. Sitting or Standing Still: Involuntary movements can make it hard to sit or stand still for extended periods without constant adjustments.
8. Complex Movements: Coordinating multiple movements at once, such as walking while carrying something or turning quickly, can be difficult.
9. Controlling Facial Expressions: Difficulty controlling facial muscles, leading to unintended expressions or drooling.
10. Mobility in Crowded Spaces: Navigating through tight or crowded spaces may be difficult due to sudden, involuntary movements.
11. Typing or Using Technology: Limited control over hands can make using a keyboard, touchscreens, or other devices challenging.
12. Fatigue and Energy Levels: The effort required to perform everyday tasks is often greater, leading to fatigue more quickly.
13. Maintaining Posture: Struggles with maintaining an upright posture when seated or standing due to fluctuating muscle tone.
14. Social Interaction: Physical challenges can make participating in social activities or engaging in group settings harder, impacting social connections.

These challenges vary depending on the severity of the condition and the individual’s level of support.

Is there a difference between Dyskinetic Cerebral Palsy and Cerebral Palsy or is it the same disorder

Dyskinetic Cerebral Palsy (CP) is a specific type of cerebral palsy, not a completely different disorder. Cerebral Palsy is an umbrella term for a group of neurological disorders that affect movement, muscle tone, and posture, caused by damage to the developing brain either during pregnancy, childbirth or shortly after birth.

There are several types of cerebral palsy, and dyskinetic CP is one of them. The main difference between dyskinetic cerebral palsy and other forms of CP lies in the nature of the movement problems.

Key Differences:

1. Dyskinetic Cerebral Palsy:
   • Characterized by involuntary, uncontrolled movements (dystonia, chorea, or athetosis).
   • Affects the muscles, leading to twisting or abrupt movements, often in the arms, legs, and face.
   • Movements can be slow and writhing or rapid and jerky, making motor control more unpredictable.
2. Cerebral Palsy (General):
   • CP includes different types: spastic, ataxic, dyskinetic, and mixed forms.
   • Spastic CP is the most common type, characterized by stiff, tight muscles and jerky movements due to increased muscle tone.
   • Ataxic CP affects coordination and balance, leading to shaky movements.
   • Mixed CP may involve symptoms of more than one type.

In summary, dyskinetic cerebral palsy is a subtype of cerebral palsy, with a distinct set of movement difficulties.

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Further Reading:

• Personal Independence Payment (PIP): What PIP is for – GOV.UK (www.gov.uk)
• Carer’s Allowance: Eligibility – GOV.UK (www.gov.uk)
• Disability Living Allowance (DLA) for children: Overview – GOV.UK (www.gov.uk)
• Dyskinetic Cerebral Palsy | Cerebral Palsy Alliance
• Dyskinetic Athetoid Cerebral Palsy | Symptoms and Treatment (cerebralpalsyguidance.com)
• Dyskinetic Cerebral Palsy | Cerebral Palsy Foundation (cpresource.org)
• Cerebral palsy – Symptoms – NHS (www.nhs.uk)
• Dyskinetic Cerebral Palsy (Dyskinesia) | Cerebral Palsy Alliance Research Foundation (cparf.org)
• https://disabledentrepreneur.uk/cerebral+palsy (14 articles)

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Conclusion:

While children with dyskinetic cerebral palsy are not eligible for PIP until they turn 16, there are several avenues for financial assistance to support their families, such as Disability Living Allowance (DLA) and Carer’s Allowance. Families need to explore all benefits and grants available to them to ensure the best possible care for their child while alleviating some of the financial burdens associated with the condition.

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