Introduction
As parents of developmentally disabled children, we often find ourselves navigating uncharted waters. The journey is filled with love, challenges, and unwavering commitment. However, as our children grow into adulthood, we must also consider their future when we are no longer able to be their primary caregivers. In this blog, we’ll explore essential steps and resources to help aging parents in New Jersey plan for their child’s well-being beyond their own lifetime.
1. Understanding the Landscape
Life Expectancy and Independence
Increased Life Expectancy: Advances in medical care and social support have significantly increased the life expectancy of individuals with developmental disabilities. For example, more than 40% of people with Down syndrome now live to the age of 60.
Independence Levels: While some individuals may achieve greater independence as they age, others will continue to rely on support and care throughout their lives.
2. Financial and Legal Considerations
Special Needs Trusts
Preserving Benefits: To ensure your child’s eligibility for government assistance programs (such as Supplemental Security Income and Medicaid), consider setting up a special needs trust. These trusts protect assets while maintaining eligibility for essential benefits.
Start Early: Establish a third-party special needs trust before your child turns 18. It doesn’t require immediate funding but will be there to protect assets when needed.
Guardianship and Decision-Making
Guardianship: Explore guardianship options to make decisions on behalf of your child when they turn18. Consider supported decision-making or limited guardianship if full guardianship isn’t necessary.
Estate Planning
Wills and Estate Plans: Consult an attorney to create a comprehensive estate plan that addresses your child’s needs. Consider naming a successor guardian and trustee in your will.
3. Life Care Planning
Future Care Arrangements
Perpetual Parenting: Many parents continue to provide care across various areas, regardless of whether their child lives at home or in supported accommodation.
Costs and Rewards: While caregiving has associated costs, it also provides a sense of purpose and reciprocal care.
Make A Plan: Although parents recognize the need to plan for the future, most do not have a firm plan in place.
4. Community Resources and Support
PLAN|NJ (Planned Lifetime Assistance Network of New Jersey)
Free Consultations: PLAN|NJ offers education and consultation to families and individuals regarding immediate or future planning and support needs.
Trust Administration: Explore their services for trust administration, life care planning, guardianship, advocacy, home visit monitoring, and representative payee services.
Charting the Life Course
Trajectory and Supports Star: New Jersey encourages planning for a good life through these tools. They help families identify supports needed by their loved ones with disabilities.
Conclusion
As aging parents, we face unique challenges, but we can also create a roadmap for our child’s future. By understanding legal, financial, and care-related aspects and accessing community resources, we can ensure that our children continue to thrive even when we are no longer their primary caregivers. Remember, you are not alone—many organizations and professionals are here to support you on this journey.
For more information, visit the PLAN|NJ website and explore their comprehensive resources and tools4. Remember that planning ahead brings peace of mind and empowers your child to lead a fulfilling life beyond your own lifetime.
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