Coffee and TA Series: Core Function Basics

Model Services

October 28, 20191:00 – 2:00 pm EST

Introductions

PRESENTERS

Danielle Haener, Psy.D.Clinical Psychologist, UC Davis MIND Institute

Kathleen Angkustsiri, M.D.Assistant Professor of Clinical Pediatrics, UC Davis MIND Institute

Brian Freedman, Ph.D.Associate Director, Center for Disabilities Studies, Delaware

Beth Mineo, Ed.D.Director, Center for Disabilities Studies, Delaware

Luis Valdez, M.P.H.Program Specialist, UCEDD TAAUCD

Webinar Overview

• Welcome and introductions • Federal guidance• Highlights and examples from the network:

– Center for Disabilities Studies– UC Davis MIND Institute

• Question and answer period• End

Coffee and TA SeriesCore Function Basics

1) Interdisciplinary Pre-service Preparation2) Continuing Education3) Community Training4) Technical Assistance

5) Model Services6) Demonstration Services7) Research8) Product Development and Information Dissemination9) Developing Core Function Plans

DD Act

H.R. 4920 — 106th Congress: Developmental Disabilities Assistance and Bill of Rights Act of 2000.www.GovTrack.us. 2000. August 30, 2018 https://www.govtrack.us/congress/bills/106/hr4920

Section 153(B) Provision of community services –

(i) That provide training or technical assistance for individuals with developmental disabilities, their families, professionals, paraprofessionals, policymakers, students, and other members of the community (ii) that may provide services, supports, and assistance for the persons described in clause (i) through demonstration and model activities.

Developmental Disabilities ProgramFinal Rule

o. The UCEDD must integrate the mandated core functions into its activities and programs and must have a written plan for each core function area.

45 C.F.R § 1328.6 2015

OIDD – UCEDD Program Funding Opportunity

According to each application for core funding, it must describe a five-year plan for meeting the purpose of the DD Act of 2000.

The five-year plan must describe how the applicant will carry out each of the following four UCEDD core functions: • Interdisciplinary Pre-service Preparation and Continuing

Education• Community Services• Research• Information Dissemination

HHS-2018-ACL-AOD-DDUC-0251, pg. 14

OIDD’s Definition of Model Services

Specialized services delivered with the intention to enhance the well-being and status of the recipient and not for testing new practices and may be integrated with training, research, and/or dissemination functions.

UCEDD Logic Model

Beth Mineo, Ph.D., CCC-SLP - DirectorBrian Freedman, Ph.D. – Associate Director

University of DelawareCollege of Education

&Human Development

Department ofHuman Development

and Family Science

Academic Units

School of Education

The College School

Centers for Children

Early Learning Center

Laboratory Preschool

Center for Disabilities Studies

Delaware Institute for Excellence in Early

Childhood

Center for Research in Education and

Social Policy

Centers for Research use in Education

Professional Development Center

for Educators

Centers for Research and

Education

Delaware Center for Teacher Education

Delaware Academy for School Leadership

Dean – College of Education

And Human DevelopmentProvostPresident

University of Delaware Board of Trustees

CDS Director

CDSManagemen

t Team

Communications & Advocacy

Extended Learning Opportunities

School-Age

Adapting Curriculum &

Classroom Environments for Student Success

(ACCESS)

Positive Behavior Support

School Climate Surveys

Center for Disabilities StudiesOrganizational Chart

Transition Education &Employment

Model

Career & Life Studies Certificate

(CLSC)

Community Connectors

National Core Indicators

Postsecondary Preparation

Programs

Associate Director

Disability Cultural Competence for

Dental Professionals

Health & Wellness

Family SHADE

Emergency Preparedness

Building BridgesAutism

Implementation Project

Shared Project

ACCESS:ABILITYUndergraduate

Affinity Program

Interdisciplinary

Pre-ServiceTraining

LEND

Disability Studies Minor

Autism-Focused

Initiatives

DelawareNetwork forExcellenceIn Autism

(DNEA)

Community

Advisory Council(CAC)

Spectrum Scholars

AssistiveTechnology

Accessible Instructional Materials Center

AT Evaluation/Consultation

Service

iCanConnect

Nowhere Else to TurnHome Modification

Program

Tobin Fund for Visual Assistive Technology

Delaware Assistive Technology Initiative(State AT Program)

Delaware Early Childhood AT Demonstration

Developmental Monitoring &

Early Language Acquisition

Guiding Considerations

• Is there evidence that the service addresses a gap?• Will the service place the UCEDD in competition with other

providers?• Does the service have the potential to influence policy/practice

external to the UCEDD?• Is seed support available to get the service “off the ground?”• How likely is it that the service can become self-sustaining once initial

seed funding has concluded?

Delaware Accessible Instructional Materials (AIM) Center

Evidence of Need

• IDEA 2004 mandates provision of instructional materials in appropriate formats to students with print disabilities

• Delaware school districts were not in compliance because they didn’t understand the law or found compliance too burdensome

• The benefits of a centralized service were demonstrated in other states (Virginia, Indiana, Wyoming)

Competition?

• The only AIM service in the state was for the exclusive benefit of students who were blind/low vision

• Delaware’s Division for the Visually Impaired was not permitted to serve students with other types of print disabilities

Potential to Influence Policy/Practice?

• Raised expectation for compliance with print disability mandate of IDEA

• A new “special factor” related to consideration of AIM was added to the IEP

• Delaware approved a more expansive definition of “print disability” than that represented in the copyright law exemption

• Educators use an evidence-based approach to determine eligibility• Thousands of students have access to AIM for both instructional and

assessment purposes

Seed Support?

• Delaware was among 15 states to get initial funding from the U.S. Department of Education, Office of Special Education Programs to explore the need statewide and develop responsive services

• Culminating activity was a statewide AIM Retreat for all stakeholders

• The Delaware Department of Education contracts with the UCEDD to operate the Delaware AIM Center serving public school students with qualifying print disabilities statewide

AIM mandate clarified in IDEA 2004

Training on AIM

mandate provided to LEAs; DOE not involved

OSEP/CAST

award to DE to

support AIM

initiative; AIM

summit in August

Seventh special factor

added to DE IEP;

eligibility guidance approved

AIM Center created;

network of Digital Rights

Managers established

AIM Center

opens to LEAs; MOU

between DOE, DVI and CDS

signed

Large group PD offered

statewide

Large group PD continues; 166 orders

for AIM fulfilled

OSEP Conference presentation;

more PD at LEA level; 238 orders

fulfilled

DE joins national

AEM advisory board;

211 orders fulfilled

Centralize ordering

portal used by

DVI & AIM Center;

292 orders fulfilled

2004 2008 2009

20112006 2012

2013 2014 2015 2016 2019

Sustainability

• Conversion to a fee-for-service offering to districts would place responsibility for participation on local education agencies

• Centralized service supported by the Delaware Department of Education ensures that all qualifying students statewide have access

• We would love to be put out of business because all educational publishers offer fully-accessible content…

We’re not there yet.

Career & Life Studies Certificate (CLSC)

Evidence of Need?

• Employment rate of people with intellectual disabilities (ID) was (and still is) abysmally low

• Creative post-school options needed for students with intellectual disabilities. CDS had existing programs that had proven successful:

• Employment services unit funded through foundation grant and eventually also through contracts with state VR and DD services.

• Campus-based secondary programs (18-21) funded through school districts.

Following proof-of-concept and external growth, these programs were phased out

• Think College and others began describing benefits of college

Competition?

• No other program in the state of Delaware

• Few programs in surrounding states at the time of creation

Potential to influence policy and practice?

• Lack of understanding of the benefits of college for students with ID• Opportunity for developing and modeling transition practices with

schools, providers, employers• Need for self-advocate leaders

Potential for Seed Support?

• Higher Education Opportunity Act of 2008

• Created grant funding mechanism: Transition & Postsecondary Programs for Students with Intellectual Disabilities (TPSID)UD was one of 27 programs to receive this grant in 2010

• Created opportunities for student financial aid through federal designation: Comprehensive Transition & Postsecondary Program (CTP)Granted CTP status in 2014

• Potential sustainability options:• Already a provider for VR and DD services• General buy-in from key people within those agencies

Career & Life Studies Certificate (CLSC)• 2-year certificate program promotes involvement

in all aspects of UD student life:• Credit-bearing courses• Internships and other career development experiences• Opportunities to utilize campus resources (library, gym,

academic support)• Opportunities to join student organizations• Option to live in UD residential facilities

• 1:1 coaching and group-based instruction/support• Assistance in finding employment post-CLSC

Growth in inclusivity over time

• Credit-bearing courses (for credit or audit)• First year seminar and other orientation

activities• Residential options• Program staff space in traditional academic

building• Alternative spring break

• Required collaboration, patience and advocacy!

Sustainability?

• Post-TPSID, prospect of an expensive program ($25K per year, not including residential)

• Relationship building with key stakeholders• Understanding their philosophy and needs• Understanding their terminology and system

• Networking with UCEDD partners and other programs

Sustainability!

• Comprehensive Transition and Postsecondary Program (CTP) designation (Pell grant and work study eligibility)

• Vocational Rehabilitation• Developmental Disabilities Services (including Medicaid)• State scholarship for college students with ID

Covers about 90% of university tuition and fees (not including residential)

• Out of state: explore creative funding options

Promoting Other Core Functions

Preservice preparation• CLSC student leadership

development• Disability Studies minors• LEND trainees

Research• Partnership with faculty and

evaluation team• Decision-making regarding

program driving research, or vice-versa.

• Two peer-reviewed articles (plus one submitted), three book chapters, and many conference presentations to date

Leveraging to build new transition programs

Career & Life Studies Certificate

Pre-Employment Transition Services (Pre-ETS)• Bridge programs for high school students• Funded through Vocational Rehabilitation

Spectrum Scholars• College-to-career program for

undergraduate students on the autism spectrum

• Collaboration with JPMorgan Chase & Co.

Questions?

• Brian Freedman – brianf@udel.edu• Beth Mineo – mineo@udel.edu

Danielle Haener, Psy.D.

Assistant Clinical Professor of Pediatrics

Clinical Director, MIND Social Skills Clinic

MIND Social Skills Clinic- UCEED Core Functions Webinar

October 28, 2019

Background

Social skills training groups aim to:

•increase social motivation•improve self esteem•decrease isolation •teach team skills involved in school and work•enhance capacity for independent living

• Program began as a Post-Doctoral Fellowship Grant funded by the MIND Institute

• Have served over 650 children and their parents and siblings since the programs inception in 2001

• Created to help address deficits that were still present after participation in early intervention (e.g. ABA)

Components of our Social Skills Program

We offer 3-4 groups per year serving the following age groups• 8-10 year old• 11-13 year old• 14-17 year old

At the same time as the child/adolescent group there is a:• Fee based parent

psychoeducation workshop• Free sibling support workshop

25 week program for children and adolescentsRequirements:• Must have a diagnosis of Autism• Must be between the ages of 8-17 • The program is very verbal, thus

participants must have a verbal IQ falling within the average range (85-115) or above.

• Must not have significant behavioral and/or mood symptoms that impair their ability to participate in group.

Staffing Logistics:

How do we make up the rest? Volunteers!• Research assistants within

MIND• LEND trainees• Medical school students• Local community college

students in the fields of counseling, school psychology, marriage and family therapy, social work, and speech and language.

We offer a 1:3 to 1:2 student to staff ratio• 1 licensed provider for each

social skills group• 1 licensed provider for the

parent workshop• 1 non-licensed provider for the

sibling support group

Group Structure

Snack time/Indoor Game Time Opening Circle Lesson Outside Time Social Experiment Joke Time Group Ends – Leaders and co-leaders checkout with child

and their family

Overview of Curriculum25 Weeks with the Following Topics:

(14)Problem Solving (Big vs. Small Problems) (15)Good Sportsmanship/Teasing(16)Problem solving for bullying, bullying vs. teasing(17)Hygiene, Nutrition and Exercise(18)Professional development(19)Making plans and phone calls for invites(20)Leadership & Team member characteristics(21)Rescue phrases, the importance of working in

groups; intro to small group project(22)Plan a project with a small team, team player

skills, seeing the big goal (23)Large Group Project Part 1(24)Large Group Project Part 2(25)Graduation

(1)Introduction (2)Conversation Skills(3)Conversation Skills Part 2(4)Friendship and Social Circles(5)Joining Conversations(6)Navigating Group Conversations(7)Emotion Recognition (Positive Emotions & Negative

Emotions)(8)Emotion Recognition (Anxiety)(9)Emotion Regulation: Anxiety, stress and coping methods(10)Emotion Regulation: Anxiety stress and coping part 2(11)Perspective Taking and Friendship(12)Socially Appropriate Lies and Social Filters (THINK)(13)Social Circles, Social Media and safety (older teens)

Personal Space, Strangers and safety (younger kids)

Strengths and Challenges

In depth 25 week program with developed curriculum

Groups meeting needs of children and adolescents aged 8-17

Insurance authorization or obtaining POS for regional center patients

Recruiting families with children who meet criteria for inclusion in the group

Cost parent workshop out of pocket Recruiting volunteers for co-leader positions

Kathleen Angkustsiri, MD, MASAssociate Professor of Clinical PediatricsMedical Director, 22q Healthy Minds clinic

22q Healthy Minds Clinic - UCEED Core Functions Webinar

October 28, 2019

Background

What is 22q11.2 deletion syndrome (22q)?– Most common microdeletion syndrome– 1/2000-4000 live births– aka DiGeorge, Velocardiofacial syndrome, and others

Medical issues– Congenital heart disease– Cleft palate and speech issues– Immune deficiency– Endocrine, growth delay

Developmental-behavioral and mental health– Borderline IQ– Risk for anxiety, ADHD, social deficits– 20-30% risk for psychosis/schizophrenia

History

2005 – 22q research program started at the MIND– DBP fellow included in research visits

2008 – clinical neuropsychological assessment added alongside research (“translational clinic”)

2009 – 22q Healthy Minds clinic (clinical assessments through insurance)

Families reporting that local providers unfamiliar with management of 22q– Particularly around learning and behavior– Uncomfortable with medications– Parents appreciate that they come to our clinic and don’t have to educate

providers about 22q

Families from Taiwan, UK, Canada, and US

• Multi-disciplinary clinic team• Developmental-Behavioral

Pediatrician• Pediatric Neuropsychologist(Ingrid Leckliter, PhD)• Cognitive Neuroscientist(Tony Simon, PhD)

• Child and Adolescent Psychiatrist• LEND trainees (PT, OT, ST, etc.)• Medical Students• Pediatric Residents

• clinic 2 x’s per month

• Administrative• Insurance authorization• Triage and record review• Intake and questionnaires• Scheduling

Clinic visit

AM – neuropsychological assessment PM – DBP/medical visit, team discussion and feedback Common topics

– Understanding developmental delay– Dealing with the diagnosis (and comorbidities)

Individualized recommendations– School recommendations and local resources– Medical treatments– Evidenced-based interventions when possible

Written report to share with local providers

Strengths and Challenges

Full day, in-depth assessment Insurance authorization (particularly for neuropsych

assessment) Travel and recruiting/coordinating with research Follow-up for non-local families Lack of adult providers/transition

Questions?

Presenter Contacts

Danielle Haener, Psy.D.UC Davis MIND Institutedrhaener@UCDAVIS.EDU

Kathleen Angkustsiri, M.D.UC Davis MIND Institutekangkustsiri@ucdavis.edu

Brian Freedman, Ph.D.Center for Disabilities Studiesbrianf@udel.edu

Beth Mineo, Ed.D.Center for Disabilities Studiesmineo@udel.edu

AUCD Contacts

Dawn RudolphSr. Director, Technical Assistance & Network Management, AUCD240.821.9387drudolph@aucd.org

Luis ValdezProgram Specialist240.821.9460lvaldez@aucd.org