Landscape of Resources for Adults with Complex Neurodevelopmental Disorders

Quick Overview

This session discussed the landscape of resources available for adults with complex neurodevelopmental disorders. The presenters highlighted the importance of person-centered and community-based services, as well as the challenges of accessing Medicaid waivers and planning for the future. They also discussed the potential of technology, such as Internet of Things and ABLE accounts, in improving support and independence for individuals with disabilities. The presenters encouraged individuals to reach out to state agencies, advocacy groups, and universities for information and resources.

Introduction

In this talk, we will explore the landscape of resources available for adults with complex neurodevelopmental disorders. The information presented here was shared during the 2019 ASF Family Conference by Sherri Brothers, Brandon Griffith, and Amy Staed. These individuals are experts in the field and have personal experience with neurodevelopmental disorders. They will discuss various resources and services available at both national and state levels.

The Arc of United States

The Arc of United States is a leading organization that provides a wide range of resources for individuals with neurodevelopmental disorders. They offer fact sheets, programs such as Futures Now and Autism Now, and advocate for disability policies. The Arc of United States is highly regarded for their work in policy-making and self-advocacy.

The Arc of Kentucky

The Arc of Kentucky is an affiliate of The Arc of United States and has chapters across the state. They offer free programs for families, including Wings for Autism and Wings for All, which provide rehearsal programs for air travel. They also provide The Futures Now program, which helps individuals plan for their future, and Advocates in Action, which trains individuals to be better advocates. Additionally, they offer Health and Fitness for All, a program that partners with YMCA to promote community access and participation.

Other National Resources

There are several other national resources available for adults with neurodevelopmental disorders. These include TASH, Sibling Leader Network, and various support groups. Support groups can be a valuable source of knowledge and support for families. The authors recommend getting connected with these groups to benefit from their powerful knowledge and experiences.

State-Specific Resources

Each state has its own set of resources and services for adults with neurodevelopmental disorders. These resources may include schools, family resource centers, health departments, SNAP, Medicaid, and more. It is important to research and access these resources before they are needed, as there may be waiting lists for certain services.

Medicaid Waivers

Medicaid waivers are a key component of accessing services for adults with neurodevelopmental disorders. These waivers provide additional supports beyond traditional Medicaid. Each state has its own set of waivers, and the services offered may vary. It is important to understand the specific waivers available in your state and how to access them.

Self-Directed Services

A growing trend in Medicaid-funded waiver services is self-directed services. These services allow participants or their representatives to have decision-making authority over the services provided. This allows for more personalized and person-centered care. Support brokers are available to assist individuals in navigating the self-directed option and communicating their needs to the state Medicaid program.

Residential Settings

There are various residential settings available for adults with neurodevelopmental disorders. These include group homes, staff residences, family care homes, and living with their own family. Studies have shown that individuals living in community settings, such as their own home or a family care home, experience improved daily living skills compared to those living in institutional settings.

Planning for the Future

Planning for the future is crucial for adults with neurodevelopmental disorders. This includes financial planning and accessing resources such as ABLE accounts. ABLE accounts are tax-advantaged savings accounts that allow individuals with disabilities and their families to save money without affecting their eligibility for public benefits. It is important to plan ahead and ensure that individuals can access the services they need as caregivers age.

Conclusion

The landscape of resources for adults with complex neurodevelopmental disorders is vast and varied. It is important to research and access these resources before they are needed, as there may be waiting lists for certain services. Advocacy groups, state agencies, and universities can be valuable sources of information and support. Planning for the future, including financial planning and accessing ABLE accounts, is crucial for individuals with neurodevelopmental disorders. By utilizing these resources and planning ahead, individuals can access the services they need to thrive.