Planning for Long-Term Care Needs of Individuals with Cerebral Palsy

Long-term care planning for individuals with cerebral palsy (CP) ensures that they have the necessary support to lead fulfilling lives while navigating the complexities of their condition. To help individuals thrive, the process should be comprehensive, focusing on their unique needs and aspirations. 

CP presents lifelong challenges that may affect mobility, communication, and daily living activities. Early and thoughtful planning alongside a knowledgeable support coordination agency can make a big difference, helping your loved one with CP live their best life.

The support coordination agency you work with will ensure that individuals with CP and their families have access to the necessary resources and services to navigate these challenges. Support coordinators help families develop a comprehensive, person-centered care plan that evolves with an individual’s needs. 

In this blog, we’ll explore five key components of long-term care planning for those with CP, so you know what to expect from your chosen support coordination agency. 

#1 – Person-centered planning

At the heart of long-term care is person-centered planning, an approach that places the individual with CP at the center of all decisions. This involves tailoring the care plan to align with the individual’s goals, preferences, strengths, and needs. Person-centered planning recognizes that each individual is unique, with different aspirations for education, employment, social involvement, and living arrangements. 

A knowledgeable support coordination agency specializes in person-centered planning. In order to create a person-centered plan, a support coordinator will address questions like: 

• What are the individual’s long-term goals?
• What support is needed to help them achieve these goals?
• How can their preferences and values guide the care plan?

Your support coordinator will review these details alongside your family to create and maintain your loved one’s Individualized Service Plan (ISP) – a comprehensive and customized document that coordinates and provides prior authorization for all New Jersey Division of Developmental Disabilities (NJ DDD) services and service providers. This process not only empowers individuals with CP to have a say in their own lives but also ensures that the care plan is responsive to their evolving needs.

Related: The 2 Main Types of Cerebral Palsy Support Services for Your Loved One 

#2 – Educational support

Education plays a key factor in the long-term development of individuals with CP. Educational support should focus on providing accessible learning environments and ensuring that individuals with CP have the opportunity to thrive academically. 

Educational institutions are required to offer accommodations, such as assistive technology, tailored learning plans, and physical access modifications to meet the specific needs of students with disabilities. Key steps in educational support include:

• Finding tailored educational programs that meet the individual’s needs
• Exploring post-secondary education or vocational training options
• Identifying transition programs that bridge the gap from school to work or independent living

Your support coordinator will work with you to navigate and take advantage of the best educational resources and support for your loved one, ensuring that their needs and goals are prioritized. 

#3 – Community inclusion

For individuals with CP, community inclusion is key to fostering independence and social well-being. 

Long-term care planning will prioritize opportunities for meaningful participation in community activities, from employment and volunteering to recreational programs and social events. Inclusive communities provide individuals with CP the chance to build social networks, engage in fulfilling activities, and gain a sense of belonging. Support coordinators can help identify:

• Local organizations that provide inclusive recreational activities
• Accessible transportation options to support community involvement
• Opportunities to connect with peer support networks and other groups

Related: Top Programs in New Jersey for Individuals with Cerebral Palsy & Their Families

#4 – Continuous evaluation and plan adjustment

Cerebral palsy is a dynamic condition, and the needs of individuals can change over time – so no long-term care plan should be static. Regular evaluations and adjustments are key to ensuring that the plan continues to meet an individual’s evolving needs. 

Support coordinators know the importance of proactive planning and ongoing communication with healthcare providers, educators, and family members. By regularly assessing the individual’s physical, emotional, and social needs, they ensure that any changes – whether they are related to new treatment options, changes in mobility, or evolving personal aspirations – are seamlessly integrated into the care plan. Support coordinators will:

• Schedule annual or semi-annual reviews of the care plan
• Update educational or support services as needed
• Reevaluate long-term goals to ensure they align with the individual’s current preferences and abilities

Conclusion 

Creating a long-term care plan for someone with cerebral palsy requires a comprehensive, flexible approach that considers their evolving needs over time. With the ongoing guidance of a dedicated support coordinator, the plan can adapt to changes to personal goals and life circumstances, ensuring that individuals with cerebral palsy receive the care and support they need at every stage. 

Looking for a trusted support coordination agency with deep expertise in cerebral palsy care? Contact Skylands Family Support today.