CDD_Annual_Report_24

Center for Disabilities and Development ANNUAL REPORT 2024

Reflecting on the Past, Planning for the Future This year, the Center for Disabilities and Development looked back on more than seven decades of providing care, supports and services for Iowans with disabilities and their families.

In July, current and former CDD staff gathered in the courtyard with family and friends to celebrate CDD’s 75th anniversary. This year also brought leadership changes to CDD. Karen Hammar, MHA, MOT, OTR/L, was named Director after serving as Interim Director for much of 2024.

And Derrick Willis, MPA, announced he would retire after serving as Director of our UCEDD since 2018. With eyes on CDD’s future, we began work on a new strategic plan to carry us forward as we provide Iowa’s best evidence-based health care, develop community programs and education, and perform state-of-the-art research.

— CDD Leadership

CDD Website CDD launched its first unified website in July.

Though CDD webpages are included on University of Iowa Stead Family Children’s Hospital (SFCH) website, CDD has never had its own website to represent the combined work we do under the CDD roof: CDD Clinical Services Iowa’s University Center for Excellence

in Developmental Disabilities

Iowa Leadership Education in

Neurodevelopmental and Related Disabilities Program

Hawkeye Intellectual and Developmental

Disabilities Research Center

Visit our new CDD website: https://cdd.center.uiowa.edu/

People with Disabilities and their Families Quality, Safety & Fiscal Responsibility

Clinical Care

Research

Community Engagement

Training

CDD People, Culture & Equity

Strategic Planning Goals Increasing patient access to clinical care

and disability services

Integrating research with patient care and training Expanding programs of excellence

and community engagement

Training interdisciplinary teams to ensure

the highest quality of care and services

Clinical Services Highlights Transition to Adulthood Clinic The Transition to Adulthood Clinic is one of CDD’s blended programs, where clinical and UCEDD staff work together to share their expertise and guidance with patients and families. Young people who face barriers to independent living, and their families, meet with an occupational therapist, an employment specialist, a clinical social worker, a self-advocate, and a nurse who help them plan to live healthy and productive lives in the community.

PEERS® Training With funding from Wellpoint, CDD and the Iowa LEND program co-sponsored the PEERS® for Adolescents Certified Training Seminar in May. The training prepares providers, educators and other professionals, including our pre-service ILEND trainees, to practice parentassisted intervention, and provides a model for an evidence-based social skills treatment for teens with ASD, ADHD, anxiety, depression and other social difficulties. Trainees represented multiple disciplines, including Social Work, Clinical Psychology, Counseling Psychology, Speech-Language Pathology, and Nursing.

CDD Serves as Family Reunification Center The Center for Disabilities and Development is the Family Reunification Center for University of Iowa Health Care. CDD staff on the Reunification Center team meet regularly to practice in case of a mass casualty situation. Should an actual event take place, staff will: Provide dependent care for children and

individuals with disabilities

Identify and reunite families and children Provide psychological first aid

New Vaccine Clinic for Patients with Unique Needs CDD created a new vaccine clinic for children and some adults with unique needs, including sensory issues, anxiety, and other disabilities with funding from the Administration for Community Living. Clinical and UCEDD staff worked together to secure funding for the project, and meet the needs of clinic patients, including: Half-hour appointments to allow time

for the patients to relax

A fast-working lidocaine-based cream

to numb the skin

Toys like bubbles and windmills to

distract patients from the shots

Hippotherapy This year, 14 patients participated in hippotherapy, with diagnoses ranging from autism spectrum disorder, cerebral palsy, down syndrome, arthrogryposis, low muscle tone, ADHD, and communication-based needs. CDD therapists facilitate hippotherapy at Miracles in Motion, incorporating the movement of horses into occupational and speech therapy sessions to help children achieve physical, sensory, and communication goals. By leveraging the horse’s rhythmic movements, therapists create a dynamic and engaging environment to improve balance, coordination, and language skills.

UCEDD Highlights Iowa’s University Center for Excellence in Developmental Disabilities (UCEDD) by the numbers: Active grants/contracts totalled $8.3 million Number of active grants/contracts: 14 Number of UCEDD staff: 52 FY24 Trainings: 197 events with 10,642 participants

Money Follows the Person (MFP) Since 2008, Iowa’s Money Follows the Person (MFP) program has helped more than 1,000 individuals with ID and BI make the transition from facilities to community living. MFP continued to grow this year, with 134 transitions made by mid-November. With renewed funding since 2019, Iowa’s MFP has grown exponentially to include 13 transition specialists, 3 behavioral support specialists, a data analyst, and 4 supervisors. Six more hires are planned for 2025 to support this highly successful project.

Disability Exchange Podcast UCEDD staff host and produce episodes of the DX podcast to center and elevate the voices of people with disabilities through meaningful conversation and connection.

Season 4 episodes include: Birdability with Cat Fribley Improving Work in Iowa: Ben Grauer

ON-TRAC ON TRAC or “Our Network of Transition Resources to Adult Care,” our ACL Community Based Transitions grant, was developed to improve the quality of health care for adults with Intellectual and Developmental Disabilities (IDD), partnering with self-advocates, families, direct service providers, and clinical staff. Grant highlights include: Access to the Curriculum in IDD Healthcare

training for the Family Medicine Residents

10 mini grants of $5,000 to projects to improve

services or access to healthcare for persons with IDD

Health fun fair for self-advocates offering the

opportunity to socialize while learning health care tidbits.

4-part series “Taking Charge of My Health”

for self-advocates

Youth Leadership Academy Iowa’s Youth Leadership Academy (YLA) welcomed its fourth annual cohort of youth and young adults with disabilities to the leadership training program held virtually each summer. This year, 13 trainees ranging in age from 14 to 21, graduated from the academy.

YLA is a collaboration between the Iowa DD Council, ASK Resource Center, Access 2 Independence, and Disability Rights Iowa.

Anyone Can Work with the Right Supports:

Center of Excellence for Behavioral Health

Iowa Compass

Iowa’s Center of Excellence for Behavioral Health (CEBH) supports and promotes the use of centralized standards and best practices to advance evidence based behavioral health interventions. Funded by the Iowa Department of Health and Human Services, CEBH offers training and technical assistance to professionals who provide employment, housing, and community support for people with serious mental illness, and suicide prevention.

In FY24 CEBH provided 16 trainings to an audience of 908 behavioral health providers across the state.

Vocational Rehabilitation in Iowa

Iowa Compass has been connecting Iowans with disabilities and complex health conditions to local, regional, state, and national services and supports since 1986. Funded through a contract with the Iowa Department of Health and Human Services, it offers person-centered support via phone, chat, text, or email.

In FY24 Iowa Compass served individuals from every one of Iowa’s 99 counties through 739 individual contacts and 20,831 resource database searches.

LEND Highlights Poster Symposium Trainees closed out the 2023-2024 academic year presenting their research at the annual poster symposium.

For the first time since 2019, the event was held in person at CDD, with the trainees from Puerto Rico attending in person.

Symposium highlights included: 29 trainees presenting posters 14 professional disciplines, self-advocacy,

Partnership with Puerto Rico’s UCEDD The partnership between Iowa’s LEND program and the University of Puerto Rico’s University Center for Excellence in Developmental Disabilities (PRUCEDD) began in 2015 to address the lack of access to providers trained in using applied behavior analysis (ABA) in Puerto Rico. A decade later, the partnership continues to: help leaders in Puerto Rico build capacity for

assessment and treatment of challenging behavior in individuals with developmental disabilities

help Iowa LEND trainees develop cultural awareness,

as they learn about the strengths and challenges of providing services to individuals with disabilities in Puerto Rico

and family issues represented

Research posters and project summaries posted

on the CDD website: https://cdd.center.uiowa.edu/ research-posters

Disability in Iowa: Working Together CDD teamed up with our sister organization, the Iowa Developmental Disabilities Council, to host “Disability in Iowa: Working Together.” Leadership from the LEND program and the DD Council have been working with Iowa State Representative Josh Turek to build awareness of disability issues among the state’s legislators. 48 individuals, including ten elected officials from both political parties, attended a learning session at CDD: to increase their awareness of the work

CDD and the DD Council do on behalf of Iowans with disabilities

to broaden their understanding of the

experience of living with a disability

to learn about the challenges of getting

access to supports and services

The event agenda featured presentations and discussions about these priorities: Direct Support Professional (DSP)

workforce shortage crisis

Gaps in Medicaid services Building the capacity of providers in the state Maximizing competitive integrated employment

opportunities for people with disabilities

Poverty Simulation The Iowa LEND program begins each academic year last with new trainees participating in a Poverty Simulation.

This annual orientation event teaches trainees about the challenges people face when they live with limited resources to provide for their families. Highlights for trainees include: Working together in small groups as “families” Spending four simulated weeks, navigating community

agencies and resources Dayrin Lovan, co-core faculty for family, serving as

proxy for the trainees from Puerto Rico, wearing an iPad to link them to the simulation via Zoom

IDDRC Highlights In 2021, Iowa established the Hawkeye Intellectual and Developmental Disabilities Research Center, one of only 15 IDDRCs in the country. The “Hawk-IDDRC” fully integrates basic and clinical research across the lifespan—from conception to adulthood—that is tailored to an underserved rural population and focused on the prevention, diagnosis, treatment, and amelioration of intellectual and developmental disabilities. (iddrc.uiowa.edu)

Hawk-IDDRC Intellectual and Developmental Disabilities Research Center

Current Research at the Hawk- IDDRC EarliTec Clinical Trial: The “Quantification of SocialVisual Engagement in ASD” study aims to determine if the EarliPoint™ Assessment for Autism Spectrum Disorder, using automated eye tracking, can help clinicians in the diagnosis and assessment of children ages 3-7 years who have or are suspected to have autism spectrum disorder and/or related developmental delays.

AGES: The Autism Genetics and Epigenetics Study (or “AGES”) aims to better understand how genetics and social experience may influence the way children develop. This study will use: audio recordings of language experience a smartphone tool called BabySteps to collect

data at home

biospecimen samples collected during their clinic

visit, to better understand autism development

The Hawk-IDDRC hosts monthly seminars on a wide range of related topics. These and other seminars are archived and available to watch online. https://iddrc.uiowa.edu/overview-hawk-iddrc/recenthighlights

PAGES: The Perinatal Autism Genetics and Epigenetic Study (or “PAGES”) aims to better understand how early life experiences and genetic factors may influence the way children develop.

Highlights: Recruit over 7,200 pregnant women and monitor

them throughout their pregnancy, delivery and their child’s development for autism

Use the BabySteps smartphone research

tool to study predictors of autism or other developmental challenges

Using fNIRS in IDD: This study (under development) will use functional near-infrared spectroscopy (fNIRS) to examine brain responses in individuals with and without intellectual and developmental disabilities (IDD).

Statewide Impact by County Lyon

Osceola

Dickinson

0

0

Sioux

4

Emmet

0

Kossuth

O’Brien

Clay

Palo Alto

4

4

4

Plymouth

Cherokee

11

1

Woodbury

 Sioux City

Worth

Hancock

Cerro Gordo

23

28

11

55

Buena Vista Pocahontas

7 Sac

Calhoun

0

0

15

Mitchell

Howard

23

11

Floyd

Chickasaw

 Mason City

129

138

Humboldt

Wright

Franklin

Butler

18

24

55

88

5

Ida

27

Winnebago

5

Webster

Hamilton

Hardin

10

83

63

32

23

Fayette

Clayton

107

45

Black Hawk

Buchanan

Delaware

Dubuque

770

90

41

463

72

Bremer

Grundy

67

Benton

96

152

Carroll

Greene

Boone

2

26

6

19

Harrison

Shelby

Audubon

Guthrie

Dallas

Polk

Jasper

Poweshiek

Iowa

6

0

8

11

46

428

55

137

268

Pottawattamie

162

Linn

Jones

1,384

67

 Cedar Rapids Cedar

Johnson

224

 Iowa City

3,341

 Des Moines

Cass

Adair

Madison

Warren

Marion

Mahaska

Keokuk

Washington

0

11

20

62

89

96

74

481

4 Mills

Marshall

Tama

Crawford

90

 Dubuque

 Waterloo

2

 Ames

CDD saw a total number of patients from

113

Monona

 Council Bluffs

Story

Winneshiek Allamakee

Muscatine

Jackson

97

Clinton

 Clinton

243 Scott

 Davenport

17 states

from as far away as Florida and Arizona

1,058

570

Louisa

238

Montgomery

Adams

Union

Clarke

Lucas

Monroe

Wapello

Jefferson

 Ottumwa

0

0

7

12

14

22

13

227

81

Fremont

Page

Taylor

Ringgold

Decatur

Wayne

Appanoose

Davis

Van Buren

1

1

2

1

16

8

14

36

28

Henry

383 Lee

11,403

Des Moines

400

unique patients

 Burlington

329  Keokuk

1,001–6,000

16–70

201–1,000

15 or fewer

14,355

total outpatient visits for FY24

71–200

Primary Payers for CDD Visits FY24 (July 1, 2023 June 30, 2024)

CDD Patient Ages (in Years)

CDD Patient Ethnicity

FY24 (July 1, 2023 June 30, 2024)

FY24 (July 1, 2023 June 30, 2024)

58%

Medicare/Medicaid

20.7%

0-2

5.4%

Hispanic

38%

Blue Cross/Blue Shield

25.3%

3-5

71.8%

White

4%

Other insurance

38.6%

6-12

9.1%

African American/Black

10.1%

13-18

0.2%

American Indian/Alaska Native

2.1%

19-21

1.8%

Asian

1.2%

21-25

0.3%

Native Hawaiian/Pacific Islander

2.2%

25+

9.8%

More than one race

1.7%

Unrecorded

Vision People with disabilities living healthy and independent lives

Mission At the Center for Disabilities and Development, we work together with individuals with disabilities and their families through evidencebased clinical care, state-of-the-art research, community engagement, and interdisciplinary training to ensure an inclusive and accessible society.

For additional information, contact: University of Iowa Stead Family Children’s Hospital Center for Disabilities and Development 877-686-0031 (toll-free); 319-353-6900 (local) cdd.center.uiowa.edu/

Iowa’s University Center for Excellence on Developmental Disabilities