FEAR: Supportive ideas after I die?

Planning for Tomorrow: The Importance of Succession Planning for Caregivers

As caregivers, we pour our hearts and souls into ensuring our loved ones receive the best possible care. But have you ever stopped to consider what would happen if you were no longer able to provide that care? It’s a sobering thought, but one that’s crucial to address. Succession planning for caregivers isn’t just about preparing for the inevitable; it’s about ensuring the continuity of care and support for your loved one long after you’re gone. In this blog, we’ll explore why succession planning is an essential step for every caregiver and how it can provide peace of mind for both you and the person you care for.

The question no one want to ask – but YOU MUST ADDRESS!

As a caregiver of an adult child with FASD, preparing for your potential death is an important but challenging task.

Here are some key steps you can take to help ensure your adult child’s continued care and support:

Establish a Support Network

• Identify trusted family members, friends, or professionals who can step in to provide care and support
• Discuss your plans and wishes with this network
• Ensure they understand your child’s specific needs related to FASD

Legal and Financial Planning

• Create a will and designate a guardian or trustee for your adult child
• Set up a special needs trust to provide financial support without jeopardizing government benefits
• Consider appointing a power of attorney for healthcare and finances

Document Care Instructions

• Create a detailed care plan outlining your child’s daily routines, medications, therapies, and support needs
• Include information on your child’s strengths, challenges, and effective strategies
• Keep medical records, FASD diagnosis information, and important contacts in an easily accessible place

Transition Planning

• Gradually increase your child’s independence in areas where possible
• Explore supported living options that may be appropriate in the future
• Connect with FASD support groups and community services that can provide ongoing assistance

Emotional Preparation

• Have open conversations with your child about future plans, as appropriate to their level of understanding
• Consider counseling or support groups for both you and your child to address fears and concerns

Ensure Continuity of Care

• Familiarize your support network with your child’s healthcare providers, therapists, and other important contacts
• Consider setting up a care team that can collaborate on your child’s ongoing needs

Planning for the future can help alleviate some anxiety and ensure that your adult child with FASD continues to receive appropriate care and support. It’s advisable to consult with legal and financial professionals who specialize in special needs planning to ensure all aspects are properly addressed.

Here are some key steps to identify suitable community service providers for your adult child in case of your death:

1. Work with your case manager or social worker to identify appropriate local providers. They often have extensive knowledge of available services and can make recommendations.
2. Contact your state’s developmental disabilities agency or department of health and human services. They can provide information on licensed providers in your area.
3. Reach out to disability advocacy organizations and support groups for recommendations and referrals to reputable providers.
4. Create a list of your adult child’s specific needs and desired services (e.g. employment support, day programs, residential options, etc.). Use this to evaluate potential providers.
5. Visit potential providers in person. Observe their programs and ask detailed questions about their services, staff qualifications, and approach.
6. Ask for references from other families who have used the provider’s services. Contact them to get honest feedback.
7. Check if the provider is Medicaid-approved if you’ll be using Medicaid waiver funding.
8. Review the provider’s policies, procedures, and any available quality metrics or outcome data.
9. Consider your child’s preferences and comfort level with different providers and settings.
10. Consult with your child’s doctors or therapists for their professional recommendations on suitable providers.

Remember to take your time with this process and thoroughly vet potential providers. The goal is finding the best fit for your adult child’s individual needs and goals. Don’t hesitate to ask lots of questions as you evaluate options.

When visiting potential community service providers for your adult child with FASD, consider asking the following key questions:

Staff Qualifications and Training

• What specific training and experience do your staff have in working with adults with FASD?
• What is your staff-to-client ratio?
• How do you handle staff turnover to ensure continuity of care?

Program Structure and Services

• What specific services and activities do you offer? Services that are commonly offered for adults needing care or support:
  • Personal care assistance (help with bathing, dressing, eating, etc.)
  • Health monitoring and medication management
  • Social and recreational activities
  • Meals and nutrition services
  • Transportation
  • Physical, occupational or speech therapy
  • Cognitive stimulation activities
  • Caregiver respite and support
  • To get specifics on services offered by a particular provider, I’d recommend:
  • Contacting them directly to ask about their service offerings
  • Reviewing their website or brochures for a list of services
  • Scheduling an in-person visit to tour their facility and discuss available services
  • Asking for references from current clients to learn about their experiences
• How do you tailor your programs to meet individual needs?
• What is a typical daily schedule like?

Safety and Supervision

• What safety protocols do you have in place?
• How do you handle behavioral issues or emergencies?
• What level of supervision is provided?

Communication and Family Involvement

• How do you communicate with families about their loved one’s progress?
• Are families allowed to visit or participate in activities?
• How often do you review and update care plans?

Specialized FASD Support

• How do you accommodate the specific cognitive and behavioral challenges associated with FASD?
• Do you offer any FASD-specific programs or interventions?

Community Integration

• How do you promote community involvement and social skills development?
• What opportunities are there for clients to engage in community activities?

Funding and Costs

• What funding options are available (e.g. Medicaid waivers, private pay)?
• Are there any additional costs beyond the basic service fees?

Quality Assurance

• Are you licensed and accredited? By which organizations?
• How do you measure and report on client outcomes?

Remember to observe the facility environment, staff interactions with clients, and overall atmosphere during your visit. Listen to their language and watch the responses and body language of the people they are paid to serve. These observations can provide valuable insights beyond the answers to your questions.