We’ve come up with a few questions based on the LifeCourse approach to help families of children with development disabilities “plot a course” for their whole lives—for their children and for themselves. The questions are divided into six life stages, from before birth to older adults. Explore all of them, or jump to the life stage most relevant to you and your child now.
- Do you have a vision or plan in mind for when your son or daughter gets older that will support his or her growth and development now?
- Is your childcare provider struggling to connect with your child? Oregon’s Inclusive Partners offers solutions and resources to best support your provider to better connect with your son or daughter.
- If your son or daughter needs testing or assessment, what can you expect? Visit OHSU’s Tips for Families Understanding Developmental Screening.
- Are there ways you can structure your son or daughter’s home and other places they spend time that will give them opportunities to do activities that young children typically do? FACT Oregon has compiled a list of organizations and resources about inclusive practices for your son or daughter.
- Do you know how to connect with other parents? The Oregon Consortium of Family Networks is a coalition of non-profit organizations that provides peer support to families.
- Are you looking for services and supports for your son or daughter with developmental disabilities? Contact your local community developmental disability program (CDDP) to find out if you are eligible for services.
- Are you keeping a vision in mind for your son or daughter’s future as he or she continues to learn and grow?
- Do you have questions about early intervention and early childhood special education services (EI/ECSE)? The Oregon Alliance for Early Intervention is a grassroots organization connecting families with leaders within the early intervention community.
- Are you looking for a training on the basics of early intervention and early childhood special education? We collaborated with FACT Oregon to develop an online training called the Great Start! Parent Empowerment Training Series.
- Are you helping your son or daughter to be included with other children in social activities, play dates, and parties? Kids Together, Inc. is an excellent online resource that includes a nationwide listserv dedicated solely to fostering inclusion in school and communities.
- Are you helping your son or daughter to make choices? Disability is Natural is a website dedicated to encouraging new ways of thinking about developmental disabilities, in the belief that our attitudes drive our actions. Changes in our attitudes and actions can create a society where all children have opportunities to live their dreams.
- Are you helping your son or daughter to try new things? This is important for helping children figure out what they want to do. Vroom assists parents to build their son or daughter’s development and better understand each child’s likes, interests, and skills.
- What do you do for yourself and your son or daughter’s siblings, to help balance your family’s needs? The Oregon Consortium of Family Networks can help you build holistic support for you and your family.
- Are you looking for effective language that helps you talk about disability in general, and/or your child’s disability? FACT Oregon offers examples of Person First Language that puts the person before the disability.
- Are you looking for services and supports for your child with developmental disabilities? Visit the Oregon Department of Education’s website to learn more about available services.
- Do you ask your son or daughter what they want to be when they grow up?
- Do you make sure your son or daughter has responsibilities at home (like other family members) such as daily chores?
- Do you have questions about the special education process or have a specific concern? FACT Oregon is the state’s federally-designated parent training and information center on issues related to special education. Click here for FACT Oregon’s Toolkit.
- Are you curious about how to advocate for the free and appropriate education (FAPE) that your son or daughter is entitled to in the Individuals with Disabilities Act (IDEA)? FACT Oregon and Disability Rights Oregon offer accessible information to families experiencing disability, including how to navigate an individualized education plan (IEP), in the 6th edition of “Special Education: A Guide for Parents & Advocates.”
- Do you have questions about universal design for learning (UDL)? The Parent Center Hub offers a 4-1/2 minute video that explains how UDL guides the design of instructional goals, assessments, methods, and materials that can be customized and adjusted to meet individual needs.
- Are you giving your son or daughter opportunities to make choices and decisions about everyday things (what they wear, what they eat for a snack, etc.)? Kids Together, Inc. offers ideas for parents, professionals, advocates, and self-advocates.
- Are there opportunities or strategies at your son or daughter’s school to help them make friends and be included? The Office of Special Education Programs (OSEP) offers information on Positive Behavioral Interventions & Supports (PBIS) to improve social, emotional, and academic outcomes for all students, including students with disabilities and students from underrepresented groups.
- Does your son or daughter’s transition plan include work or volunteer experience, and practicing how to look for a job, get a job, and keep a job? Visit Charting the Lifecourse: Daily Life and Employment Guide to learn more about planning for work and volunteer experiences.
- Have you talked with your son or daughter about post-secondary education? Have you taken him or her for college visits? This can include undergraduate programs or programs on college campuses for students with intellectual disabilities. Think College offers an online directory of 268 college programs for students with disabilities.
- Have you talked with your son or daughter about where he or she might want to live in the future (after school ends/when they reach adult age)?
- Are you helping your son or daughter to learn how to share their goals, hopes, and dreams at school and other support meetings? The Oregon Self Advocacy Coalition is a coalition of self-advocates from across the state that support people with intellectual and developmental disabilities (I/DD) to fight for their rights and the rights of others with I/DD.
- Are you exploring alternatives to guardianship so your son or daughter can retain his or her right to make their own choices and decisions? Disability Rights Oregon offers a Guardianship Handbook: Protective Proceedings for Adults that helps you understand your child’s options.
- Does your son or daughter have opportunities to do what other young people do for fun?
- Are you connected to other families that have experienced or are experiencing the transition from high school to adulthood? The Oregon Consortium of Family Networks can help you build and pursue goals, hopes and dreams for your son or daughter, after their school years.
- What will you do during the day now that you are an adult? Will you have a full-time job, part-time job, volunteer, or go to some sort of program? Oregon’s Employment First team has created the Employment Road Map, which is a tool that helps people with Intellectual or Developmental Disabilities and their families plot a customized course to a job using available services and supports.
- Where can you learn or improve employment skills to find a community job? What employment services are available in Oregon and how can they assist you in your job search? The Oregon Department of Human Services offers special resources on Supported Employment services in Oregon.
- Are you looking for services and supports as an adult with developmental disabilities? Contact your local community developmental disability program (CDDP) to find out if you are eligible for services.
- What kind of supports do you need to be independent and live in the community? Once you are eligible for developmental disability (DD) services, you will go through an advising process to learn your options for case management and other DD services available.
- If you are an adult living in your family home or your own home, do you know your choices for case management services? You can choose either a Service Coordinator (SC) at your local CDDP; or a Personal Agent (PA) at a local support services brokerage.
- Would a limited or joint bank account, automatic bill pay, or debit card help you with managing your own money? There are a variety of options, and your case manager (SC or PA) can help you decide what is best for you. Oregon ABLE Savings Plans are another great way for Oregonians with disabilities and their families to save for eligible expenses and for the future—without affecting state and federal benefits. Open up a plan at http://oregonablesavings.com/.
- Do you need help to advocate for what you want and to live the life you want? The Oregon Self Advocacy Coalition is a coalition of self-advocates from across the state that support people with intellectual and developmental disabilities (I/DD) to fight for their rights and the rights of others with I/DD.
- What supports does your family member need to continue living as independently as possible in his or her own home and community as they age? How can technology assist them to live as independently as possible?
- If I’m still living at home with my parents, what will happen when my parents die—where will I live, and with whom?
- Do you have a “road map” for how to best support your family member when you are no longer able?
- Are there senior citizen resources in your community? Visit Oregon Department of Human Services’ Services for Seniors & People with Disabilities website to learn about in-home support and services, caregiver support, independent living services, and other resources in your community.
- Is there a nearby senior center for social activities? Find a senior center near you.
- Who will emotionally support your family member when another close family member or friend passes away?
- Who else understands your family member’s medical needs and is available to help communicate those needs to others?
- Who can help your family member create a will and help him or her make their wishes known for medical directives?