Connections Newsletter July 2025

Click here to see the OADS Connections Newsletter - July 2025 it is original format.

Director’s Corner – It’s A Wrap!

The Legislature wrapped up its work for this year on June 25.  On the policy front, OADS proposed three bills, all of which were enacted after unanimous votes in the Joint Standing Committee on Health and Human Services. 

LD 51, An Act to Increase Oversight of Fatalities and Serious Injuries to Adults Subject to Public Guardianship, will expand the reviews conducted by the Aging and Disability Mortality Review Panel located at the Maine Centers for Disease Control (CDC).  The Panel currently reviews deaths and serious injuries of individuals who participate in any of our five home and community based services (HCBS) waiver programs, including many who are subject to public guardianship.  Under this bill, the Panel will now review all public guardianship deaths, whether or not the individuals are HCBS participants.  OADS put this bill forward as part of a broader strategy to advance quality.  For more on our quality efforts, see articles below on HCBS quality and QuEST.

LD 709, An Act to Establish the Respite for ME Program, was introduced by OADS in response to the successful outcomes and features of the Respite for ME pilot program initially funded through Governor Mills’ Maine Jobs and Recovery Plan. The bill unifies existing state and federally funded respite programs, adopting the most effective features of Respite for ME while streamlining access for caregivers and simplifying administration for Area Agencies on Aging. More types of caregivers will benefit from respite care and supplemental services while service priority will be maintained for family caregivers of individuals of any age with Alzheimer’s Disease and related dementias. For more on the results of the Respite for ME pilot, see this Department blog post.  

LD 769, An Act Regarding Access to Behavioral Health Supports for Adults with Certain Disabilities, represents a meaningful step forward for adults with intellectual and developmental disabilities who need behavioral health supports. It authorizes OADS to update our rules and replace a burdensome statutory process to provide timely access to supports when needed.  See more on this LD and next steps for implementation below. 

This was a challenging legislative session for the State budget, with temporary federal COVID-19 funding ending and growth in State revenues slowing.  For aging and disability programs, the budget maintains current funding levels after several years of significant increases.  The Legislature did support several budget initiatives critical to the people supported by OADS programs.  First and foremost, the MaineCare budget was bolstered by more than $500 million per year (state and federal funds combined) in the biennium that began on July 1, addressing needs in many service areas, including HCBS waiver programs.  In addition, the budget includes positions needed to finish development and implement a new Lifespan waiver program (See Lifespan update below) and to support new licensing and related quality initiatives across our programs.  Also, HCBS programs received a 1.95% cost-of-living adjustment on July 1 and will receive approximately 1% more in January 2026.  The Legislature also added a one-time $3 million appropriation to be allocated to Area Agencies on Aging to address needs among Maine’s growing number of older adults, as well as a modest annual appropriation to enhance funding for Respite for ME.  

Still to be determined is the impact of federal budget actions, which could cause significant cuts to Medicaid, nutrition and other programs important to the people supported by OADS.  The Department is closely monitoring federal developments and keeping the Congressional delegation fully informed of the impact various proposals would have on Maine. 

On a personal note, I am retiring on August 1.  It has truly been an honor to lead this office and work with such a committed group of people.  I have so appreciated the opportunity to work in Governor Mills’ administration and under the leadership of Commissioners Gagne-Holmes and Lambrew.  I will miss this work deeply, but I look forward to spending much more time with family and friends.  Our long-time Chief Operating Officer, Mark Lutte, will be Acting Director while the Commissioner conducts a permanent search.  It makes it easier to leave knowing that OADS will be in very good hands. 

Regards, Paul

OADS Completes a Deep Dive into Quality Assurance for Home and Community Based Services (HCBS)

Quality services are a critical expectation for all OADS programs. In SFY 2025, OADS completed two assessments of service system quality focused on the health and safety of individuals receiving Home and Community Based Services (HCBS) and the upcoming Federal Access Rule as it relates to HCBS. To help OADS plan for future HCBS system improvements, OADS partnered with Alvarez and Marsal (A&M) to complete these assessments. Each assessment focused on the current state of our HCBS system and recommendations for how to strengthen our HCBS system in the future.

For health and safety of individuals receiving HCBS, A&M looked at Maine's incident management system, engaged interested parties, and reviewed the system against national standards. A&M also made suggestions for future incident management system improvement so that high-quality services are provided based on the Centers for Medicare and Medicaid Services (CMS) and Office for Inspector General rules. While the incident management system recommendations focused on future improvements to Section 21 and 29 HCBS waiver services, this assessment also included consultation with other HCBS waiver programs and Adult Protective Services (APS). As a result of this assessment, A&M recommended several incident management-related, promising practices for OADS to consider, such as streamlining the incident management process, strengthening quality assurance meetings with HCBS providers, enhancing outreach to Members, Self-Advocates, Families and Guardians, and the creation of an HCBS Quality Improvement Collaborative. A copy of the incident management system final report is available on the OADS Initiatives webpage here. 

In addition to completing an assessment of Maine's HCBS incident management system, A&M reviewed a federal rule, known as the "Access Rule" that sets new requirements for HCBS waiver programs. The Access rule contains several provisions related to service quality, access to HCBS services, and quality reporting. A&M reviewed Maine's current practices for each of the Access rule's requirements, identified gaps, and developed a roadmap with recommendations for future system changes to ensure that Maine is ready to meet the Access rule's standards. A copy of the Assessment of Access Rule Compliance is also available on the OADS Initiatives webpage.

Now that these assessments are complete, OADS has begun prioritizing future system changes based on available resources. For SFY 2026, OADS will focus on key incident management systems improvement and enhancements to quality measurement and reporting. Later this summer, OADS will seek nominations and convene an HCBS Quality Improvement Collaborative to advise us in this work. The Collaborative will include interest holders from across the HCBS system, including self-advocates, families, providers, and others. The call for nominations will be announced in an OADS e-bulletin and publicized through interest holder organizations. Updates regarding Maine's plans for HCBS quality improvement will be provided on the OADS website.

Third Round of HCBS Consumer Surveys Now in Progress

Starting in July 2025, OADS is conducting a third annual Consumer Assessment of Healthcare Providers and Systems Home and Community Based survey (HCBS CAHPS®). The HCBS CAHPS® survey provides valuable information about HCBS waiver member service experiences throughout Maine. The survey data collected is part of OADS quality improvement strategy. Since 2023, nearly 4,000 individuals receiving HCBS have participated. OADS goal is to gather feedback from an additional 2,000 HCBS program participants in 2025. Previous survey results (2023-2024) are available here.

Maine Nursing Homes on a QuEST for Quality

QuEST (Quality, Excellence, Staffing, and Teamwork), a collaboration across multiple offices of DHHS, including OADS, DLC, and OMS, as well as the Maine Long-Term Care Ombudsman Program (LTCOP) and Maine Health Care Association (MHCA) was launched in the early months of 2025. QuEST uses value-based payments to incentivize higher quality, combined with technical assistance to explore strategies to improve staffing stability, decrease the overuse of antipsychotic medications, and maximize resident and family satisfaction.

QuEST offers monthly learning sessions based on a 3-pronged technical assistance webinar series to help nursing homes focus on and improve their scores in the above areas. The first prong, “Making Sense of VBP,” is led by MaineCare and focuses on understanding the components of the value-based payment program, including criteria, technical aspects, and supports available to improve outcomes in the targeted measures and to earn a share of the quality bonus pool. The second prong, the “Dementia Care Partnership” is led by the Maine Health Care Association and focuses on implementing non-pharmacological strategies to decrease the overuse of antipsychotic medications among nursing home residents. Finally, the “Culture Change Coalition,” led by the Office of Aging and Disability Services, is built upon tools and strategies contained in the Artifacts of Culture Change 2.0. This initiative offers changes in workplace culture as a strategy for empowering staff, decreasing turnover, and reducing the use of temporary agency staff. In 2025, participation in these three initiatives under the QuEST umbrella, along with other quality activities, will determine each nursing home’s eligibility for a portion of an $8.1 million quality bonus pool. Beginning in 2026, quality payments will progressively be more challenging and awarded based on measured outcome performance.

On May 28th, OADS and OMS hosted the most recent session of Making Sense of VBP to expound upon CoreQ, a survey designed to measure satisfaction of nursing home residents and their family members. Dr. Lindsay Schwartz and Dr. Nick Castle, renowned for their work around the development of the CoreQ tool as well as numerous other quality improvement work in nursing homes, presented to 140 participants including Administrators, Directors of Nursing, Quality Champions, and senior nursing facility leadership, representing 97% of Maine’s nursing homes. While CoreQ is not yet included formally as a value-based purchasing measure of the Nursing Facility (NF) rate reform rule, OMS and OADS are anticipating an amendment later this year to include CoreQ and are in regular communication with nursing facilities who are eager to implement the surveys once the details around the requirements are finalized.

See DHHS' blog post:  DHHS Partners with Maine Health Care Association and Long Term Care Ombudsman Program on a QuEST for Nursing Home Quality

Residential Care Satisfaction Survey Pilot Project Completed

Satisfaction surveys are an important part of quality assessments and improvements across most settings in health care. They provide valuable insights into patient experiences, allowing providers and organizations to identify areas where they excel and areas that need improvement. As described in the article on QuEST, a satisfaction survey for residents living in nursing homes and their families, called CoreQ will be one of the quality measures to be included in the new value-based payment model for nursing home care.

In 2024 and 2025, OADS and the Office of MaineCare Services (OMS) pilot tested the assisted living version of CoreQ with 17 Residential Care Facilities across the state. Staff within the pilot facilities were introduced to CoreQ through a series of webinars and lectures. They gained experience and knowledge in the principles of quality assessment and quality improvement. Upon receiving the results of the surveys completed by their residents and families, facility staff gained insight into what was working well, and where there might be opportunities for improvement. They were motivated to take action and make some important changes in the ways they interact with, and care for their residents and families. Actions included offering more activities, addressing dietary concerns, and forming a resident council. This CoreQ implementation pilot also provided OADS and OMS with opportunities to consider ways to better partner with nursing homes, as they get ready to implement CoreQ as part of the new value-based payment model.

A copy of the final report with results from the Residential Care CoreQ pilot can be found here.

What is the Nursing Home and Residential Care Innovation and Quality Advisory Council?

In 2022 the National Academies of Science, Engineering and Medicine (NASEM) released its landmark report, The National Imperative to Improve Nursing Home Quality, which described in detail the challenges and deficiencies in the care of residents living in nursing homes across the country. In 2023, as the Office of MaineCare Services (OMS) prepared for a transition to a new model of reimbursement that is value-based rather than fee-for-service, the Office of Aging and Disability Services (OADS) convened a stakeholder of experts to explore what is known about quality in nursing homes. In particular, what is known about the quality of care delivered in Maine’s nursing homes?

The stakeholder group was named the Nursing Home and Residential Care Innovation and Quality Advisory Council (“the Council”). Participants included national and state experts in long term care and the care of older adults, experts in aging, nursing home administrators, geriatricians, medical directors, and consumer and resident advocates. Eight meetings were held via Zoom in 2023. Presentations and topics of discussion included the present way of reporting quality today, through Nursing Home Care Compare at Medicare.gov, where one can find the results of the Five-Star Rating System for each nursing home in the United States. This system assigns a rating of 1 to 5 stars, with 5 being the highest. These stars are based on a facility’s performance in three key areas: health inspections, staffing, and clinical quality measures. A key takeaway from that deep dive into the Five-Star Ratings revealed that while Maine facilities generally perform well, there is significant variation in performance among facilities, and there are many opportunities for improvement.

Other topics and discussions explored in the Council meetings of 2023 included the goal for person-centered care, the need for a well-trained, well supported staff, and the successes of a national movement toward “household models” of care that provide nursing home environments that are more home-like, and allow both privacy when that is necessary, and opportunities for relationship and community development to support the best possible quality of life for residents.

The model describing the themes that contribute to quality in nursing homes was depicted in the following diagram. The most important outcome is the delivery of person centered/person directed care. The resident is at the center of all activities. If a facility is capable of delivering high-quality clinical care, and presents a safe and comfortable living space, and is staffed by a workforce that is well-trained and well-supported, these staff will be empowered to deliver care to the resident that is consistent with their goals, preferences and priorities.

The work of the 2023 Nursing Home and Residential Care Facility Innovation and Quality Advisory Council informed and guided the workgroups of OADS and OMS as the new value-based payment model was developed and implemented, specifically with regard to measures chosen to be included. As QuEST has picked up the heavy lift of helping facilities prepare to meet these measures in 2025 and beyond, “the Panel” hopes to provide ongoing dialogue, support, and innovation in the goal of helping all residents receive the best possible care.

The link to the Council’s final report of 2023 can be found here.

 

Innovation Summit Offers a Glimpse of Things to Come

This past May 2025, The Innovation Summit: A Path for Maine was held in Portland, where more than 500 stakeholders gathered to reimagine services for individuals with intellectual and developmental disabilities (IDD), autism, brain injury, and other related conditions. Hosted by the Department of Health and Human Services’ Office of Aging and Disability Services (OADS), in partnership with the National Disability Institute, the Summit brought together providers, policymakers, advocates, and innovators committed to advancing inclusive, person-centered services. In a welcome letter, Governor Janet Mills shared her personal connection to the issue through her grandson, Zach, and reflected, “I still think about Zach every time a family in Maine tells me they are having a hard time finding care for their loved ones.” Her message underscored the urgency of the work and encouraged participants to explore bold ideas and technologies that increase independence and improve outcomes.

Throughout the event, participants shared models and tools driving systemic change—particularly those informing Maine’s upcoming Lifespan Waiver, scheduled to launch in late 2026. Highlights included Home and Community-Based Services (HCBS) Innovation Pilot Grants, which have supported 19 projects since 2022, and Lifespan Readiness Grants awarded to nearly 80 providers preparing to deliver 17 new services. Innovations on display included remote supports, shared living models, self-employment pathways, expanded youth self-advocacy, and improved support for individuals with co-occurring developmental and mental health needs. Commissioner Sara Gagne-Holmes in her opening remarks to the conference emphasized the need to move beyond conversation, stating, “Transformation happens when ideas move beyond the conference and into communities.”

A public Tech Expo showcased cutting-edge assistive technologies, apps, and services for people with IDD and related conditions, inviting attendees and community members to explore hands-on solutions. More than just a single event, the Summit marked a call to action—urging participants to challenge the status quo, align efforts across sectors, and continue shaping a more inclusive, responsive service system for all Mainers.

A survey of attendees confirmed that the conference was a meaningful experience for all involved.

See the DHHS Blog Post:  Innovation and Inclusion: Advancing a Path for Maine

Progress on Lifespan Waiver Continues

The development of Maine’s Lifespan Waiver remains a key priority for the Office of Aging and Disability Services (OADS), with continued efforts focused on stakeholder engagement, provider readiness, and interagency collaboration.

In June 2023, OADS published a Concept Paper and a plain language summary outlining the proposed waiver design on the Lifespan Waiver webpage. Developed with input from the Lifespan Stakeholder Advisory Group, the Concept Paper described the waiver’s goals, proposed services, and service definitions. It also served as one of four formal public comment opportunities. Feedback received has played an important role in shaping the Lifespan Waiver application, which is currently under development. To gather broad community input, OADS hosted a series of in-person and virtual stakeholder sessions across the state in September 2023. These sessions provided updates on the waiver design, reflected public feedback on the Concept Paper, and offered opportunities for providers, members, and families to ask questions and share insights.

A December 2024 blog post provided an updated implementation timeline, with the waiver now anticipated to launch in summer 2026. A draft of the waiver application is expected to be released for a 30-day public comment period in late summer 2025.

To stay informed, the Lifespan Waiver FAQ will continue to serve as the primary source for updates and new information. 

As part of ongoing provider readiness efforts:

• A Provider Rate Study has been developed and shared for public comment. The review of submitted feedback is currently underway. This study informs proposed rate structures within the Lifespan Waiver and aligns rates across similar services in other waivers.
• In preparation for Lifespan, the Department awarded Readiness Grants to over 70 providers interested in offering new supports. These grants, along with technical assistance provided by the National Disability Institute (NDI), have now been completed.
• For continuing updates and tools to support providers, please visit the Lifespan Waiver Provider Resources page.

The development of the Lifespan Waiver reflects deep collaboration with self-advocates, family members, providers, and other community stakeholders. Within state government, this effort is supported by leadership and staff across DHHS, including the Commissioner’s Office, the Office of MaineCare Services (OMS), and the Office of Child and Family Services (OCFS), as well as by external agency partners such as the Department of Education (DOE) and the Department of Labor’s Office of Vocational Rehabilitation—particularly in areas supporting transition-aged youth and employment.

“Day in the Life” Videos Bring Direct Service to Life

Launched in July 2024, the Careers with Purpose marketing campaign builds on the success of the Caring for ME initiative. Its goal is to recruit and retain direct service workers across sectors including aging, intellectual and developmental disabilities, brain injury, physical disability, and mental health. The campaign also aims to attract a more diverse workforce—such as retirees, new Mainers, career changers, and individuals with lived experience.

Careers with Purpose highlights the compelling stories of direct service professionals, emphasizing compassion, connection, and meaningful work. The Department of Health and Human Services (DHHS), in partnership with the Department of Labor (DOL), the Maine Long-Term Care Ombudsman Program (MELTCOP), and the Direct Care and Support Advisory Council, produced a series of “Day in the Life” videos. These videos showcase the vital roles of Direct Support Professionals (DSPs), Certified Nursing Assistants (CNAs), and Personal Support Specialists (PSSs), offering a realistic look into these fulfilling careers.

The videos raise awareness about opportunities in the direct care field while amplifying the voices of care providers and fostering trust within local communities. They are available on the Careers with Purpose website, Maine’s Essential Workforce Partnership blog, and the Maine Long-Term Care Ombudsman YouTube channel.

Day in the Life, CNA 

Day in the Life, PSS 

Day in the Life, DSP

Direct Service Worker Core Curriculum Piloted with Personal Care Agencies

The Direct Service Worker (DSW) curriculum is designed to streamline entry into direct care and support roles across diverse settings and populations, offering a foundational, portable credential for Personal Support Specialists (PSS) and Direct Support Professionals (DSP). It follows a hybrid learning model that includes 12 hours of asynchronous online training paired with 8 hours of live instruction, improving efficiency and reducing the time needed to gain certification. The curriculum aims to support a better-prepared workforce by providing stronger, more relevant training for those working with the aging population and incorporating aging-related instruction for professionals serving individuals with intellectual and developmental disabilities (IDD). The training emphasizes person-centered practices, integrates behavioral health concepts throughout, and delivers a high-quality learning experience. It includes interactive online modules with closed captioning and narration on every slide, translation into the top five languages spoken by New Mainers and American Sign Language (ASL), and hands-on skills demonstrations. A pilot program has been launched with personal care agencies, in anticipation of broader implementation pending MaineCare rule changes. It will be incorporated as the core training for DSPs when new DSP training is rolled out in 2026.

Legislature Approves Department Bill to Improve Access to Behavioral Supports

The Department bill, LD 769 “ An Act Regarding Access to Behavioral Health Supports for Adults with Certain Disabilities”, which passed unanimously out of the HHS Committee, represents a meaningful step forward for adults with intellectual and developmental disabilities who need behavioral health supports. It authorizes OADS to update our rules and replace a burdensome statutory process that often delays the provision of needed services.

Developed with input from a diverse stakeholder workgroup, the legislation reflects national best practices and was strongly supported by self-advocates and Disability Rights Maine. Many shared powerful testimonies about the trauma associated with the use of restraints, which helped shape this bill’s key reforms:

• Streamlines approval of behavioral health supports by replacing the existing regional three-person review committees with internal clinical oversight at OADS and quarterly review of trends by a Support and Safety Committee, including self-advocates, families, DRM, and OAB.
• Streamlines oversight of safety devices and clarifies that safety devices are not behavioral supports.
• Eliminates the use of planned restraints, while preserving emergency use when immediate harm is imminent.
• Repeals the statutory provision allowing providers to impose “house rules,” aligning with HCBS Global Rule principles of autonomy and self-determination.

By adopting a trauma-informed, person-centered approach, LD 769 promotes the rights and dignity of Mainers with IDD and autism. For more information, please read what Maine Public wrote about the bill signing.

OADS is reconvening the stakeholder workgroup to advise on the development of the rules that will implement this Legislation, which takes effect on April 1, 2026.

LD 769 is the latest of several actions designed to improve supports for adults with IDD with behavioral health needs. See the OADS Behavioral Health Initiatives page for related activities and tools.

Older Adults Trying New Tool to Find Services

Funded by the American Rescue Plan Act, the Maine Access Navigator launched in July 2024 to help older adults, their family, and their care partners find services, resources, and programs that are tailored to meet their unique needs. It is free to use and can be used at any time. So far, over 1,000 people have used this tool, with 78% of users electing to connect to their local area agency on aging for additional assistance. When surveying users, 89% said the tool was easy to use, and 28% of users accessed the tool using a smartphone. OADS is exploring ways to expand the use of this tool in the future for more populations and possibly integrate it with other available screening tools.

OADS Presents Aging Policy Updates at Maine Geriatrics Conference

Associate Director Karen Mason provided an update on state and federal policy impacting older adults at the 32nd Maine Geriatrics Conference on May 21-22. This annual event organized by the University of New England allowed participants to engage with national, international, and local presenters on topics that affect older adults. The Department of Health and Human Services (DHHS) appreciates the opportunity to participate each year, sharing our successes, discussing future policy opportunities, and hearing feedback from attendees. The DHHS update can be accessed here, and all conference presentations are available on the UNE website.  

Quadrennial Long Term Services and Supports Report Now Available

Every four years, the Office of Aging and Disability Services (OADS) is required to provide a Long-Term Services and Supports (LTSS) Report in accordance with Public Law 22 §50; PL 2019, c. 612. This report outlines the types of publicly funded services currently available in Maine, including demographic information, and recaps LTSS reforms, strategies, and improvement initiatives that OADS has undertaken in collaboration with other departments within the Department of Health and Human Services (DHHS), the aging network, and other interested parties.

APS Annual Report

In 2021, the Maine Elder Justice Roadmap recommended publishing an annual report identifying trends and patterns in Maine Adult Protective Services (APS) data in order to help develop ongoing recommendations for system improvement. This report covers State Fiscal Year 2021 to 2024, with some data focused on FY 2024 alone. In the last two years, the APS annual report has also included public guardianship data. You can view the report in its entirety here.

Some highlights include:

 

 

 

Maine Entrepreneur Featured at National Conference

Maine was proud to be represented at the National APSE (Association of People Supporting Employment) Conference, held June 11–14 in Washington, D.C. This annual event brings together professionals, advocates, and individuals dedicated to advancing inclusive employment for people with disabilities.

A highlight for Maine was a joint session featuring staff from the Maine Office of Aging and Disability Services and the Rhode Island Developmental Disabilities Council. The session showcased how both states are leading efforts to create self-employment pathways for people with disabilities and autism—offering a meaningful alternative to traditional jobs and empowering people to turn their skills and passions into income and independence. This initiative is supported by a growing network of allies, including families, business leaders, service providers, and advocacy groups. Together, they’re building systems that help entrepreneurs with disabilities succeed. There is also increasing interest in forming a national coalition of providers, entrepreneurs, and families to expand and sustain this innovative approach.

We were especially honored to have two entrepreneurs from Maine and Rhode Island join the presentation to share their personal journeys—their challenges, successes, and what self-employment has meant to them. Mandy Lyman, owner of Mandy’s Paw-sitive Strides, a dog-walking business in Patten, Maine, shared how running her business has helped her build confidence, increase her independence, and stay healthy. Rachel Rasnick, owner of Rachel Rasnick Art in Rhode Island, spoke about how participating in a self-employment business class series and becoming an entrepreneur has positively impacted her life. One of the most meaningful parts of the trip, both said, was meeting each other and becoming fast friends. They even hope to travel together again in the future.

While the presentation was well-received overall, attendees shared throughout the rest of the conference that Mandy and Rachel truly stole the show.

Maine remains committed to expanding opportunities and fostering innovation in employment for people with disabilities.

SE Group 1: (l-r) Liz Korson (Maine OADS), Sue Babin (Rhode Island Developmental Disabilities Council), Mandy Lyman (Mandy’s Paw-sitive Strides), Rachel Rasnick (Rachel Rasnick Art), Kimberly McLaughlin (Independence Advocates of Maine), and Karen Rasnick (Rachel Rasnick Art).

Maine SE Group: Liz Korson (left) and Lisa Cline (right), both from the Maine OADS, who helped lead the Self-Employment for ME Pilot Project, stand with business owner Mandy Lyman (Mandy’s Paw-sitive Strides) and Kimberly McLaughlin, Community Program Coordinator at Independence Advocates of Maine.

Mandy and Rachel: Entrepreneurs and new friends Mandy Lyman (left) and Rachel Rasnick (right) celebrate their success with dinner and drinks in Washington, D.C.

Helping Individuals with Intellectual and Developmental Disabilities Stay Healthy

How can we help people with intellectual and developmental disabilities (IDD) stay healthy? People with IDD experience the same health challenges as those without IDD. They get the flu and the common cold. They get high blood pressure, diabetes, and struggle with their weight. But why is it that those with IDD die 15-20 years younger than those without IDD? The reasons include the challenges that individuals with IDD have in accessing ongoing primary care, including screening and preventative services. Also, many health care providers lack the skills and training to appropriately assess and manage the unique health needs of those with IDD.

Experts in the care of people with IDD have long recognized that there are 5 conditions or patterns of symptoms, when not recognized, can be fatal for this vulnerable population. They are called the “Fatal Five,” and include aspiration, dehydration, constipation, seizures, and sepsis.

1. Aspiration is the inhalation of food or drink into the airway. This can result in immediate death due to choking, or it may result in inflammation of the lungs, pneumonia, and sepsis. Many people with IDD have swallowing difficulties or gastroesophageal reflux disorder (GERD), predisposing them to aspiration.
2. Dehydration occurs when there is either decreased fluid intake or excessive fluid loss through urine, sweat, or diarrhea. It can result in fatigue, dizziness, decreased urine output, kidney failure, and increased risk of infection, resulting in death. Some with IDD do not recognize thirst. Or they might be on diuretics that can result in dehydration if not monitored. Excess urination can be the result of poorly managed diabetes. Exposure to extreme temperatures can also result in dehydration
3. Constipation can occur with inactivity, dehydration, dietary deficiencies, or with particular medications, such as calcium and iron. It can lead to abdominal bloating, discomfort, bowel obstruction, and even death.
4. Seizures can result in trauma and injury, resulting in wounds that present opportunities for bleeding and infection. Seizures are also a risk factor for aspiration and choking.
5. Sepsis

The important thing about the Fatal Five is that these represent opportunities to intervene and prevent an avoidable death. While people without IDD can recognize changes in their bodies and communicate for assistance, the sensory and communication challenges of IDD make it harder for them to ask for help. They depend on their support networks, such as families and direct support professionals, to help them identify and respond to health needs.

Over the next few months, OADS will be thinking about ways to share this important information with our staff, providers, and families, in hopes of keeping our people with IDD safe. For more information, read more in The Fatal Five: An Overview for IDD Staff | Relias.

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