Let’s start there. Who needs to be at the table? We have but a few short years to figure this out.
Solutions for Consideration:
- Identify caregivers in Colorado over the age of 55.
- Send a survey/or have case managers inquire about the status of the items listed below in the succession plan.
- Find out what kinds of support families need, including financial aid, to complete the tasks listed below.
- We have benefit navigators for SSA benefits and transition specialists for our students as they transition from school to adult life. Perhaps we need transition specialists to assist in this—the big transition.
- Developing a system of navigators who can help individuals plan for the inevitable separation from their parents would be wise. This effort could include connecting with grief counselors, which is vital for people with disabilities.
- Convene a private/public partnership meeting with organizations like the Financial Planning Associations, the Colorado Trial Attorneys Association which helps people with structure settlements and financial planning after injury, the Colorado Fund for People with Disabilities, and the Colorado Arc and member chapters.
- Peer to Peer Mentoring utilizing technologies currently available. Social media, video, podcasts, etc.
Parents of children with special needs want to be involved in creating a comprehensive strategy to ensure their child’s well-being and care when they can no longer provide support. This process is time-intensive and expensive; many don’t know where to start.
Here are some steps and considerations to keep in mind when developing a succession plan:
Legal and Financial Planning:
- Will and Trusts: Work with an attorney experienced in special needs planning to create a will and trusts that outline how assets will be distributed and managed for the benefit of your child. A special needs trust (SNT) can help protect your child’s eligibility for government benefits while providing for their needs.
- Supported Decision-Making or Guardianship: Create a supported decision-making agreement and designate the person/people to assist your adult child in making their decisions or designate your child’s legal guardian when you can no longer care for them. This person should be familiar with your child’s needs and be willing to take on the responsibility.
Life Insurance: Consider getting life insurance to provide income for your child’s ongoing needs.
- Beneficiary Designations: Ensure that beneficiary designations on retirement accounts, insurance policies, and other financial assets are updated to reflect your child’s trust as the beneficiary.
- Medicaid and Social Security: Understand how inheritance or other financial changes might impact your child’s government benefits, such as Medicaid and Supplemental Security Income (SSI). Special needs trusts can help preserve eligibility for these benefits.
Care and Support Network;
- Identify Caregivers: Establish a network of caregivers, family members, and friends who will support your child’s daily needs and advocate for their well-being.
- Transition Plan: Create a detailed plan that outlines your child’s routines, preferences, medical history, and other critical information. A transition plan will help ensure a smooth transition when new caregivers take over.
Medical and Therapeutic Care:
- Medical Information: Document your child’s medical history, current medications, treatment plans, and healthcare providers. Share this information with your child’s caregivers.
- Therapies and Services: Identify the therapies, interventions, and services that your child currently receives and ensure these will continue in your absence.
Education and Vocational Planning:
- Education Plan: Develop an Individualized Education Plan (IEP) or a transition plan for your child’s education. This will help ensure a seamless continuation of their education and support services.
- Vocational Training: If applicable, explore vocational training and employment opportunities that align with your child’s abilities and interests.
- Family Discussions: Involve all family members and stakeholders in discussions about the succession plan to ensure everyone is on the same page and understands their roles and responsibilities.
- Review and Update: Succession plans should be reviewed and updated regularly to account for changing circumstances, such as changes in your child’s needs, changes in caregivers, or changes in laws and regulations.
- Consult Experts: Seek guidance from financial advisors, attorneys specializing in special needs planning, and other professionals who can help you navigate the complexities of creating a robust succession plan.
- Emotional Support: Recognize the emotional challenges of planning for your child’s future without you. Seek emotional support from friends, support groups, or counselors to help you navigate these feelings.
Every family’s situation is unique, so it’s essential to maintain a person-centered approach to succession planning.
Honoring the later phases of life for people who pioneered education, community living, and employment with continued knowledgeable support is essential. Their quality of life should not end when their parents can no longer support them.
Let’s not make them the crisis generation of people with disabilities who are re-segregated like their predecessors.