SD Network

Category: Resource

The highly anticipated fifth Self-Direction National Inventory for the 2023 AARP Long Term Services and Supports  (LTSS) State Scorecard has arrived!
Applied Self-Direction conducted an extensive national survey of self-direction programs in the United States. The research revealed eight key findings on the growth of self-direction, along with data on program expansion and ideas for future policy development. 

According to the 2023 Inventory, there are more than 1.5 million people who self-direct their long-term services and supports. This represents a 23 percent increase since 2019. By comparison, enrollment grew by 17 percent from 2016 to 2019. Most states (44) reported an overall increase in self-direction enrollment and six of those states have more than doubled self-direction enrollment since 2019.  

Inventory data confirms the pandemic accelerated the expansion of self-direction nationwide. States reported that self-direction uptake rates spiked during the early days of the pandemic due to a combination of factors, such as emergency Medicaid waiver amendments. Self-direction became critical to filling the void left by the widespread closure of day services and other supports across the country, and in many states helped family caregivers receive payment for the care they provide. It has also helped mitigate, but alone cannot entirely make up for, pervasive workforce shortages. New to this edition of the Inventory - a comprehensive list of state strategies to address workforce shortages.

Read the  report

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The Center for Transition to Adult Health Care for Youth with Disabilities, a national resource center funded by ACL’s Administration on Disabilities (AoD), has launched a new website to help young people with intellectual and developmental disabilities (I/DD) direct their own transition to the adult health care system.
 
Developed for and by youth with I/DD, the site has a variety of both person-centered and culturally competent tools and resources to help support youth, their families, and health care professionals through this important transition.

Resources on the website are designed to give youth more choice and control throughout their health care transition. Examples include helping youth gain an understanding of their legal rights and responsibilities in a health care setting and supporting them to lead appointments and at-home health care routines. The website’s data section shows that only 14% of youth with I/DD receive health care transition preparation and guidance from their doctor.

The site also includes resources developed by Center partners, including Family Voices, Got Transition, SPAN Parent Advocacy Network, and two AoD-funded University Centers of Excellence in Development Disabilities (UCEDDs): the Institute for Human Development at University of Missouri-Kansas City and the Waisman Center at the University of Wisconsin-Madison. Both of these UCEDDs have done extensive work in the field of health care transitions for youth with I/DD. 

The Center for Transition to Adult Health Care for Youth with Disabilities was established through a five-year cooperative agreement awarded in September 2021. The project is funded under the Projects of National Significance within the Developmental Disabilities Assistance and Bill of Rights Act. 

For additional information, contact Dana.Fink@acl.hhs.gov.

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The Access Board congratulates the Web Accessibility Initiative (WAI) and the Accessibility Guidelines Working Group (AG WG) with publishing Web Content Accessibility Guidelines (WCAG) 2.2 as a World Wide Web Consortium (W3C) Recommendation.  WCAG 2.2 adds nine new Success Criteria to WCAG 2.1 (which added 17 Success Criteria to WCAG 2.0) and includes links to supporting documents that explain how to make web content more accessible to a wider range of people with disabilities.  The additional Success Criteria address barrier encountered by people with visual, mobility, hearing, and cognitive disabilities, but not covered by WCAG 2.1 or 2.0.  The new requirements in WCAG 2.2 address ways to help users navigate and find content, operate functionality more easily through various inputs beyond keyboard, develop webpages to appear and operate in predictable ways, and readily avoid and correct mistakes.  Additionally, WCAG 2.2 includes personas to help explain some aspects of the WCAG Success Criteria.

Learn More
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CMS recently released a Medicaid Transportation Coverage Guide, which highlights existing policies and includes new policies to address issues such as extended wait times and long-distance trips. It also addresses coverage of transportation for non-Medicaid eligible parents, family members, or other caregivers when required to participate in a Medicaid eligible child’s care.

Medicaid transportation is a critical service that assists beneficiaries with accessing covered Medicaid services and has a direct impact on health outcomes. This guide will help states understand the federal requirements for this service and flexibilities they can implement.

View guide

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 Connecting Wisconsin families with special health care needs to essential support and resources


The Wisconsin Department of Health Services (DHS) today launched a new service that will transform the support structure for families of children with delays, disabilities, special health care needs, or mental health conditions. Wisconsin Wayfinder: Children’s Resource Network includes a user-friendly website and toll-free helpline that lets families easily connect with real people – dedicated children’s resource guides – who will help navigate through the essential services and supports that will enable their children to thrive.

“This service is a critical step toward improving the way families with special health care needs access and connect with the vital resources they need, especially during crucial moments like after an initial diagnosis,” said DHS Deputy Secretary Deb Standridge. “Our children’s resource guides are people committed to personally assisting families on this journey. Wisconsin Wayfinder embodies our commitment to inclusivity, support, and accessibility for our state’s children and their families.”

A statewide, user-friendly website, dhs.wi.gov/wiscway, and toll-free number, 877-WiscWay (877-947-2929), provide families with convenient, direct access to compassionate and knowledgeable children’s resource guides.

View the entire news release.

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CMS released a set of resources addressing the needs of adults with intellectual and developmental disabilities (I/DD) living with, and receiving care from, aging parents or guardians. The set includes resources for state Medicaid and partner agencies to provide new or additional support to adults with I/DD and their caregivers as they age and experience life transitions. They include: 

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The Disability Information and Access Line (DIAL) is an easy way to get connected to the services you need! Visit DIAL’s new website, dial.acl.gov, to get connected to programs and services that can help you access transportation, housing and other essential services—right in your community. Ways to connect with DIAL: online search or chat at dial.acl.gov, call/text/videophone 888-677-1199 or email DIAL@usaginganddisability.org. Connect directly to an agent in American Sign Language.

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The ability to participate in our democracy by voting in elections is a foundational right of citizenship that we cherish as Americans. No adult should be denied this right because of their age or ability. This principle is clearly reflected in the Biden-Harris Administration’s Executive Order on Promoting Access to Voting.

ACL and the disability and aging networks are working together to ensure that older adults and people with disabilities can exercise their right to vote. ACL's programs provide a variety of resources, including information and education, supportive services and legal assistance. They also work with their states and communities to improve access to the voting process. This includes a number of grants funded through the Help America Vote Act.

As Disability Voting Rights Week comes to a close, we wanted to share ACL’s recently updated voting resource "hub." This page includes a variety of resources to support disabled people and older adults in exercising their right to vote.

View ACL's Voting Resources Page
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The National Council on Independent Living released its 2022 Advocacy Priorities Guide. This document contains specific information on the national legislative and policy priorities identified biannually by the NCIL membership, including funding for the Independent Living Program, healthcare and long-term care, housing, transportation, education, and more.

View guide

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The Core Standards for Information & Assistance Professionals in Self-Direction resource, developed with the generous sponsorship of Centene, is designed to provide information to states, managed care organizations, and other stakeholders regarding core competencies and skills for professionals providing Information and Assistance (I&A) in support of self-direction. I&A is essential for helping participants understand self-direction, navigate their program and its rules, and have a successful experience self-directing. An underpowered I&A function can limit not only a program’s growth and participant satisfaction but also its integrity, as one of the core functions of I&A is to provide additional program monitoring and safeguards.

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