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Dana Fink, ACL

At least one-third of people with intellectual and developmental disabilities (I/DD) also have a mental health disability. I am proud to be one of them and to be able to work on programs at the Administration for Community Living (ACL) that facilitate our meaningful engagement in the community.

As is true for all people with mental health disabilities, treatment and supports that are personalized to our needs, values, and goals, and which respect and uphold our right to make decisions about our lives, are crucial to our community participation and to our health.

However, mental health systems are often not equipped to accommodate people who also have other disabilities, particularly those of us with developmental disabilities, such as autism, cerebral palsy, or fetal alcohol spectrum disorders. As a result, many of us are unable to get the care and support we need.

I know this too well. Six years ago, I experienced a mental health crisis. I entered a hospital emergency department, where I spent days being denied service by every local inpatient and partial hospitalization program because they were not able to handle the potential health risks of my physical disability. I was eventually able to access community-based crisis services, but that is often not the case.

Significant provider capacity shortages can lead to long stays or boarding in inappropriate settings like hospital emergency departments and psychiatric hospitals. In addition, people with co-occurring I/DD and mental health conditions often struggle to the get the treatment and services they need because of siloed services systems. Some address only mental health needs. Others address only needs related to the person’s other disabilities — and often only a portion of those. The systems often offer different types of services or have different policies for similar services. Finding all of the access points and engaging with each one individually to cobble together the holistic services a person needs can be challenging under the best of circumstances. For a person experiencing a mental health crisis, it can be an insurmountable barrier to care.

For youth in the child welfare system, it can be even more challenging. Because there are far too few foster homes available for children and youth with I/DD and mental health conditions, it is not uncommon for them to end up living in a series of temporary placements in inappropriate settings, including hotels, homeless shelters, and even child welfare administrative offices. The lack of a stable home environment and bouncing between the systems, particularly during critical developmental years, compounds the trauma of growing up “in the system” and decreases the likelihood of receiving needed treatment and services.

It’s not surprising, then, that when compared to our peers who have only mental health disabilities or only intellectual/developmental disabilities, those of us with both mental health conditions and other disabilities have poorer health and housing outcomes over the course of our lives, and we are more likely to live in institutional settings.

To best serve people with co-occurring mental health conditions and other disabilities, we must break down these silos and collaborate across systems to provide holistic treatment and support.

That is why ACL created The Link Center. Led by four national organizations representing directors of the state agencies that provide I/DD, mental/behavioral health, and brain injury services, The Link Center focuses on building partnerships and facilitating information-sharing across systems.

The center also works with federal partners to improve support for people with co-occurring disabilities to live in the community. For example, SAMHSA recently partnered with ACL to fund The Link Center’s policy academy on ensuring an inclusive 988 Suicide and Crisis Lifeline response. SAMHSA’s 988 Suicide and Crisis Lifeline provides free, confidential support and referrals to resources to people experiencing mental health crises. As states are building robust 988 systems, there is a growing recognition of the need to ensure these services are available to everyone, including people with I/DD, brain injuries, and people who cannot rely on speech alone for communication. The Link Center’s policy academy is providing technical assistance to six states to support cross-system collaboration that ensures 988 is responsive to community needs.

In addition, the center maintains an online library of resources, models, and promising practices on a variety of topics to support people with disabilities and their families, advocates and allies, policymakers, direct support professionals, and clinical professionals in improving the lives of people with co-occurring disabilities.

For example, The Link Center’s Adaptive Strategies Video Series features adaptations clinicians can make to evidence-based interventions like cognitive and dialectical behavior therapies to better serve people with both mental health conditions and other disabilities.

Another collection of resources aims to improve understanding of the impact of trauma and to support implementation of trauma-informed practices — and to support people with disabilities in managing trauma. Like many of us with developmental disabilities, I have experienced trauma due to a lifetime of invasive medical procedures, and that trauma often impedes the progress of my medical care. People with I/DD are also at increased risk for physical and sexual abuse, restraint, seclusion, and neglect, all of which can cause additional trauma. A unique tool from The Link Center, “Tips to Manage Triggers,” was created by and for people with co-occurring disabilities to help them deal with traumatic situations.

I am so fortunate to get to work on programs, like The Link Center, that directly improve outcomes for my community. As we close Mental Health Awareness Month for 2024, I am looking forward to continuing to work with ACL’s partners in the disability networks to continue to improve access to non-coercive, person-centered, and culturally competent mental health care, empowering people with disabilities to seek responsive services and equipping providers with adaptable tools. 

 

Assistive Technology Keyboard.

By Roba Hrisseh, Ph.D., OSEP Scholar, OSEP Intern

What is assistive technology?

Assistive technology (AT) includes two main components:

  • AT devices, and
  • AT services.

AT devices are defined by the Individuals with Disabilities Education Act (IDEA) as “any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of a child with a disability.”

AT services consist of “the selection, acquisition, or use of an assistive technology device.” AT services include the evaluation of a student with disability for AT, the provision of the AT for the child, the designing or customizing or adapting of AT devices, and the training about how to use the AT, among other items.

AT can range from low-tech (easily attainable, do not require batteries, and inexpensive) to high tech (not as easy to obtain, usually computer-based, and expensive to attain).

Diagram on Assistive Technology: Low Tech: Software screen readers Speech generating systems Eye-gazing devices Specialized learning software High Tech: Pencil grips Visual schedules Communication boards Graphic organizer

What are some examples of AT?

Some examples of AT that are low tech include pencil grips, visual schedules, slant boards, graphic organizers, modified scissors, page holders, communication boards.

Some examples of AT that are high-tech include screen readers, speech generating devices, eye-gaze devices and specialized learning software.

What is the AT guidance?

Recent excitement has emerged about the newly released AT guidance from the U.S. Department of Education. But what is the AT guidance?

The AT guidance is a document jointly released by the U.S. Department of Education’s Office of Educational Technology and the Office of Special Education Programs that aims to increase understanding of AT for students of all ages.

To notify the release of the guidance, a Dear Colleague Letter was published from Glenna Wright-Gallo, Assistant Secretary of the Office of Special Education and Rehabilitative Services (OSERS), and Roberto J. Rodríguez, Assistant Secretary of the Office of Planning, Evaluation, and Policy Development.

There are two parts to the AT guidance:

  • the Dear Colleague Letter, which aims to introduce the guidance to everyone, and
  • the AT Myths and Facts document, which aims to make an easier understanding of AT rules in IDEA, clear up common misconceptions about AT, and share examples of AT device and service use for children with disabilities.

Why is this important?

Technology is continuously developing and progressing. Specifically, assistive technology, which is designed to support students with disabilities is also constantly evolving. The AT guidance helps to increase understanding of AT in education, which can help educators better support all students in accessing high-quality education.

Where can I learn more?

Several technical assistance (TA) centers are available to help, who are funded by the Office of Special Education Programs. These TA centers provide technical assistance about AT to schools, individuals, families, districts, states, and other stakeholders. Some of those of those TA centers that offer support specifically about AT are outlined in the table below:

 TA Center Name    Supports
Bookshare Supporting students with dyslexia, blindness, cerebral palsy, and other reading barriers through accessible educational reading materials.
Center for Innovation, Design, and Digital Learning (CIDDL) Supporting the use of educational technology for educators, related services, or preparation programs. Building capacity for higher education faculty to use educational technologies in personnel preparation.
Center on Inclusive Technology & Education Systems (CITES) Supporting school districts to create systems that can include all students with disabilities with a focus on assistive technology and accessible materials.
Audio Description and Captioning Described and Captioned Media Program (DCMP) Supporting individuals through a robust library of audio description and captioning resources, accessible education videos, teaching tools, and professional development opportunities.
Use of Technology for Early Childhood Assessment Innovative Technology for Early Childhood Assessment (INTECA) Supporting stakeholders in early intervention in using technology to administer assessments remotely
National Center on Accessible Educational Materials Providing technical assistance, coaching, and resources of accessible educational materials and technologies for individuals with disabilities.
National Instructional Materials Access Center Supporting the production of accessible educational materials in Braille, large print, and digital text.
STEMIE: Innovation for Inclusion in Early Education Support the development and enhancement of engagement in STEM for students with disabilities.

The U.S. Department of Education submitted its 2023 Individuals with Disabilities Education Act (IDEA) annual report to Congress in March.

 

The 45th Annual Report to Congress, compiled by the Office of Special Education Programs (OSEP), focuses on children and students with disabilities who received services specific to IDEA Part C for infants and toddlers or IDEA Part B for children and youth.

The report summarizes U.S. progress in:

 

  • providing a free appropriate public education for children with disabilities under IDEA Part B, and early intervention services to infants and toddlers with disabilities and their families under IDEA Part C;
  • ensuring that the rights of these children with disabilities and their parents are protected;
  • assisting states and localities in providing IDEA services to all children with disabilities; and
  • assessing the effectiveness of efforts to provide IDEA services to children with disabilities.
Read the 45th Annual Report to Congress preface or view the full report.
2023 Annual Report to Congress on the Individuals with Disabilities Education Act (IDEA)
 

Medication management for people who are visually impaired

Visually impaired people are more than twice as likely to need help with medication management. Use these tips for medication labels, storage, and administration.
 

Registration opens in March

Mark your calendars to join us on Thursday, May 2, 2024, for the 7th Annual Older Adult Mental Health Awareness Day Symposium!

This free, all-day, virtual event will feature an engaging plenary, informative sessions, and a diverse array of topics addressing the most pressing needs in older adult mental health.

The symposium is brought to you by ACL, the Health Resources and Services Administration (HRSA), the Substance Abuse and Mental Health Services Administration (SAMHSA), and the National Council on Aging (NCOA).

Watch your inbox for free registration information in mid-March!

Who should attend?

Public health practitioners, professionals in the aging network, mental health providers, health care professionals, and anyone interested in ensuring the mental health of older adults are encouraged to attend. In partnership with the E4 Center of Excellence for Behavioral Health Disparities in Aging, NCOA anticipates offering continuing education for several disciplines.

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