At the start of every new year it is important to take a moment and reflect on what you and your family members accomplished last year and to make a plan for what lies ahead. The St. Louis Arc has adapted a yearly “to do list” originally produced by the Arc of Northern Virginia, for your family to use as your loved one with an intellectual or developmental disability moves through the various life stages.

Resources for Parents and Siblings

  • Build a circle of support
  • Undertake estate and financial planning
  • Write a will and Letter of Intent
  • Understand legal authority, supported decision making, and guardianship
  • Establish a Special Needs Trust
  • Explore ABLE accounts
  • Identify qualified providers and build relationships
  • Create record keeping system
  • Ensure health insurance
  • Attend workshops and find support groups
  • Sign up for the St. Louis Arc enewsletter and keep contact information handy
  • Find the elected officials making policies that affect my family
  • Learn about proposed legislation that could change the lives of people with disabilities
  • Contact my legislators to let them know my priorities
  • Learn how to use Charting the LifeCourse resources

Birth – Childhood

  • Seek information about your child’s delay(s) or diagnoses
  • Find needed specialists
  • Develop a system for organizing important information for your child
  • Connect with other families
  • Build a circle of support
  • Identify support providers
  • Find an early intervention program
  • Know my rights under IDEA
  • Understand the Special Education process
  • Advocate for my child and work for inclusion
  • Develop a “get to know me” profile for your child for educators and service providers
  • Learn about differences by grade levels
  • Understand how to create an use an IEP to support your child’s development
  • Identify play, recreational, and social opportunities your child will enjoy
  • Build social skills and support friendships
  • Give responsibilities to build independence and confidence
  • Continually identify and encourage your child’s gifts, talents, and strengths
  • Identify long-term supporters for your child and yourselves
  • Prepare for transition out of school

Transition – Adulthood

    • Create a vision for the future
    • Learn about school and local transition services
    • Identify post-secondary resources and options for higher education
    • Determine employment alternatives
    • Identify creative employment options
    • Write a resume, search for jobs, apply and interview
    • Explore job search and training resources
    • Work with job coaches and find long-term job supports
    • Learn and develop self-advocacy skills
    • Identify transportation options
    • Manage benefits while working
    • Identify recreational and social opportunities
    • Develop a housing plan
    • Learn about housing programs and providers
    • Experience one or more nights away from family
    • Increase independence in personal care, household management, and money management
    • Continue to build friendships and consider roommate options
    • Clarify roles and relationships with circle of supporters
    • Understand eligibility for benefit programs (SSI, SSDI, and Medicaid)

Aging

    • Build future support networks
    • Assess financial resources
    • Make durable plans for housing and services
    • Maintain quality of life
    • Build a circle of support
    • Explore benefits and estate planning
    • Learn important information for Older Parents of Adult Children with Disabilities
    • Provide information for Future Caregivers
    • Identify recreational and social opportunities
    • Advocate for necessary services/funding

Download a checklist for you and your family to use at home.

 

 

One comment on “Things “To Do” in 2018 for My Loved One with a Disability”

  1. 1
    Rebecca Droste on January 20, 2018

    I absolutely love this “To Do” list!! Very useful. It brings me back to focus on what’s important.
    Thank you!

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