BEYOND PRESCHOOL: WHERE WILL THE INCLUSION JOURNEY TAKE US?2014 NATIONAL EARLY CHILDHOOD INCLUSION INSTITUTE

PRE-CONFERENCE SESSION

Chris Egan, MSW, LCSW

Developmental Disabilities Training Institute

Jordan Institute for Families – UNC School of Social Work

May 2014

FAMILY STRESS IS SIGNIFICANT

• Research indicates “that families of children with disabilities experienced

significantly greater hardship than did other families. As family income rose

above the federal poverty level, hardship declined sharply for families of

children without disabilities but not for families raising children with disabilities.

Thus, the U.S. federal poverty level was found to be a particularly poor predictor

of hardship for families raising children with disabilities. Finally, among families

of children with disabilities, single-mother and cohabiting partner families

particularly were at risk for experiencing severe hardship.” Parish 2008

C. EGAN 2014

EARLY CHILDHOOD: MADDOX LUCILLE

Desired Outcomes:

• Be with family

• Have friends

• Be respected

• (I AM) Capable

• Achieve personal goals

• Achieve therapy goals

Effective Supports:

• Family and friends

• Early Intervention Supports

• Preparation for transition to school

• Attention to evolving definition of personal

outcomes and associated supports through

person and family centered approaches

3.5 minutes

Short video

http://www.youtube.com/watch?v=hkNzRjXK3hc&feature=g-hist C. EGAN 2014

INCLUSION IN SCHOOLS

• Although inclusion is an accepted best practice in special education, little progress has

been made in including students with intellectual and other developmental disabilities.

Using historical and the most recent available federal data, I explored the percentage

of students with intellectual disabilities who are fully included in regular education

classrooms, both nationally and in individual states. States are rank ordered by the

percentage of students who are included. Nationally, in 2002–2003, less than 11% of

students with intellectual disabilities were fully included in regular education classrooms.

Research, policy, and advocacy issues are addressed. – Smith & Obrien, 2007

C. EGAN 2014

INCLUSIVE SCHOOL SETTINGS: OLIVETTE AND KEITH

Short Video

3:30

Desired Outcomes:

• Connected to family

• Be with my friends

• Be respected

• (I AM) Capable

• Achieve my personal goals

• Learn

• Use my time in ways that are productive

Effective Supports:

• Family

• School

• Friends

• Periodic specialized supports

https://www.youtube.com/watch?v=0Ejh_hb15FcC. EGAN 2014

ONE PAGE PROFILES

• http://onepageprofiles.wordpress.com/2013/09/19/making-familylife-run-a-little-more-smoothly/

• http://www.helensandersonassociates.co.uk/reading-room/how/person-centred-thinking/one-page-profiles.aspx

The Learning Community for Person Centered Practices

• A One page summary about YOU

• Includes at least three blocks of information including

• Your unique qualities and gifts

• What’s important TO you

• The Help and Support that you need from others

• Useful for Everyone – children, Teens, Adults, Older Adults

• Can be used in Schools, Work, with Families, Health Care, etc…

• Creates a new framework for listening and for shared power

• You share what you want

• Can be the starting point for a person centered plan

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TECHNOLOGY!

• Computers and iPads http://disabilitynetwork.org/technology/40-amazing-

ipad-apps-for-the-learning-disabled/#.U3p4HvldXO8

• The Upsy! http://www.huffingtonpost.com/2014/03/25/upsee-kids-walk_n_5027905.html

• Simply home and Ablelink Technologies

https://www.youtube.com/watch?v=1i7O04T_WEA

Increased autonomy and

independence

Privacy

Stress capability

Better use of limited resources

C. EGAN 2014

INTEGRATED EMPLOYMENT

• Integrated employment is a heavily valued role, yet people with developmental disabilities rarely find

or keep integrated jobs.

• “Real jobs" means real paychecks, which enable individuals to afford housing, food, clothing and the

supports and services necessary for them to live - and work - in the communities of their choice. In a very

concrete way, "real jobs" will support people to live out their dreams and aspirations, a goal we can all

identify with. Unfortunately, the employment rate for people with developmental disabilities is only

22%, compared to 79% for typical Americans. This has forced people who could live independently to

depend heavily on others to define and support their choices. Jim Gardner formerly of CQL from The Alliance for Full

Participation, “Real Jobs -It's Everyone's Business”. Accessed 2/9/14 http://www.allianceforfullparticipation.org/about-afp-2/campaign-for-real-job

C. EGAN 2014

INCLUSIVE EMPLOYMENT: TIM’S PLACE

3:30

Integrated employment is a heavily valued role yet for people with

developmental disabilities rarely find or keep integrated jobs.

“Real jobs" means real paychecks, which enable individuals to

afford housing, food, clothing and the supports and services

necessary for them to live - and work - in the communities of their

choice. In a very concrete way, "real jobs" will support people to

live out their dreams and aspirations, a goal we can all identify

with. Unfortunately, the employment rate for people with

developmental disabilities is only 22%, compared to 79% for

typical Americans. This has forced people who could live

independently to depend heavily on others to define and support

their choices.

Jim Gardner formerly of CQL from The Alliance for Full Participation, “Real Jobs -It's Everyone's

Business”. Accessed 2/9/14

http://www.allianceforfullparticipation.org/about-afp-2/campaign-for-real-job

Tim’s Place Video“It is a dance of magic” … Tim

https://www.youtube.com/watch?v=y6He0FWoFj0

C. EGAN 2014

CMS HOME AND COMMUNITY STANDARDS

• New CMS Rule On Home and Community-Based Services Gives States Greater Flexibility to Serve the Disability

Community

• Overview of the Settings Provision:

• Integrated and supports full access to greater community

• Selected from various options

• Ensures rights – privacy, dignity and respect, freedom from coercion and restraint

• Optimizes autonomy, independence in life choices and facilitates choice of services

• Privacy including lockable door, choice of roommates

• Control of schedule including access to food at any time

• Can have visitors at any time

• Physically accessible

C. EGAN 2014 January 10, 2014: Fact Sheet: Summary of Key Provisions of the HCBS Settings Final Rule (CMS 2249-F/2296-F

CHOOSING WHERE YOU LIVE!

C. EGAN 2014

REGARDLESS OF INTENSITY OF SUPPORT NEEDS:A NEW KIND OF LISTING – CHRIS MEDLICOTT

Short Video

Key Points:

Earned Social Capital

Valued as a unique person –

having a role

Having Voice

Technological supports

Attitude

https://www.youtube.com/watch?v=Vj8jHYjZfxk

C. EGAN 2014

HEALTH AND WELLNESS

• Women Be Healthy Project – focusing on health awareness and cancer screening

• Health Meet – The Arc and CDC focused on reducing health disparities

• Taking Care of Yourself, The Living Healthy Program Can Show You How

• Chris Mackey, NC Office on Disability and Health

• Barbara James, Community Care of Wake & Johnston Counties (part of Community Care of

North Carolina – CCNC

• CNN: Promoting fitness for people with disabilities: http://www.cnn.com/2014/05/01/us/cnnheroes-norton/

1:47

C. EGAN 2014

PARENTING AND INTIMACY: NPR STORY CORPS: BONNIE

BROWN AND MYRA

Audio file

Key Points:

• Capability

• Love and intimate relationships

• Managing responsibilities

• Family

• Inclusion

• Work

http://www.prx.org/pieces/91986-storycorps-bonnie-and-

myra-brown

C. EGAN 2014

CRISIS PREVENTION

• START and NC START

• Keeping Families Together

• "I thank the staff for their professionalism and kindness to our family, and I hope for

everyone's continued support of this program that works to comfort the hurting and

keeping families together!" ~ Family member who recently participated in Therapeutic

Respite through the NC-START program

• http://www.ncdhhs.gov/mhddsas/services/crisisservices/ncstart.htm

C. EGAN 2014

NATIONAL CORE INDICATORS: NORTH CAROLINA

National Core Indicators (NCI), a joint venture between the National Association of State

Directors of Developmental Disabilities Services and the Human Services Research Institute,

has been in operation since 1997.

• 43% of respondents from North Carolina reported they chose or had some input in

choosing their where they live.

• 3% of respondents from North Carolina are using a self-directed supports option.

• 62% of respondents from North Carolina reported they chose or were aware they could

request to change their home staff.

• 14% of respondents from North Carolina were reported to be working in community-

based employment.

• 75% of respondents from North Carolina reported they have a best friend (who may be

staff or family).

NCI Adult Consumer Survey Outcomes - North Carolina Report 2011-2012 Data

C. EGAN 2014

PERSONAL OUTCOME MEASURES DATA

The Council On Quality and Leadership established the Personal Outcome

Measures database in 1993.

Based on over 8,200 people interviews conducted

during CQL Accreditation visits for 20 years, our findings

reveal:

• Safety, security, and health are well supported in these organizations

• Exercising meaningful choice in important life decisions remains a

challenge for most people

• Community integration and enhanced social roles are the least likely to be

present in people’s lives

Setting the Bar for Quality: The Personal Outcome Measures® National Database 20th Anniversary Report

C. EGAN 2014

32.5%

37.5%

40.6%

46.2%

49.8%

50.3%

51.3%

55.7%

56.3%

61.7%

70.0%

70.4%

72.2%

74.4%

76.7%

78.2%

78.5%

78.7%

82.7%

84.0%

86.5%

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% 100.0%

People Perform Different Social Roles

People Live in Integrated Environments

People Choose Where they Work

People Choose Where and With Whom they Live

People Exercise Rights

People Choose Services

People Choose Personal Goals

People are Treated Fairly

People have Friends

People Remain Connected to Natural Support Networks

People Participate in the Life of the Community

People have Intimate Relationships

People Interact with Other Members of the Community

People have the Best Possible Health

People Use Their Environments

People Decide When to Share Personal Information

People Experience Continuity and Security

People are Respected

People Realize Personal Goals

People are Free From Abuse and Neglect

People are Safe

Personal Outcome Measures® January 2010 (N=7,879)

C. EGAN 2014

CQL DATA – OUTCOMES THAT ARE LEAST PRESENT

The regression analysis revealed these

outcomes to have the greatest degree of

predicting many more outcomes for the

person:

• Exercising rights

• Choosing where to live

• Choosing where to work

• Performing different social roles

Setting the Bar for Quality: The Personal Outcome Measures® National Database 20th Anniversary Report

C. EGAN 2014

NORTH CAROLINA’S SYSTEM OF SERVICES

Human Service Research Institute: Strategic Analysis for Change, August 2011

In comparison to many

other states, North

Carolina remains

heavily vested in

institutional models of

support for people

with intellectual and

developmental

disabilities. Yet,

greater personal

outcomes and cost

savings are achieved

when moving toward

integrated

approaches.

C. EGAN 2014

IMPROVING OUR SYSTEM

• Optimistic discontent?

• Change requires ongoing positive pressure on the system

• Shared living http://www.dol.gov/whd/homecare/shared_living.htm

• Spread the word to end the word UNC WRAL story

• Technology

C. EGAN 2014

RESOURCES AND REFERENCES

• NC Council on Developmental Disabilities website: http://www.nc-ddc.org/

• National Association of Councils on Developmental Disabilities

• Human Service Research Institute: Strategic Analysis for Change, August 2011

• Setting the Bar for Quality: The Personal Outcome Measures® National Database 20th Anniversary Report, 2013

• NCI Adult Consumer Survey Outcomes - North Carolina Report 2011-2012 Data

• Susan L. Parish, S., Roderick A. Rose, R., Michal Grinstein-Weiss, M., Erica L. Richman, R., & Megan E. Andrews, M. (2008).

Material hardship in U.S. families raising children with disabilities. 75(1), 71-92.

• Phil Smith and John O'Brien (2007) Have We Made Any Progress? Including Students With Intellectual Disabilities in Regular

Education Classrooms. Intellectual and Developmental Disabilities: October 2007, Vol. 45, No. 5, pp. 297-309.

• North Carolina DD Consortium Public Policy Statement on DD System Design, 2012

• The Council on Quality and Leadership

• The Learning Community for Person Centered Practices

C. EGAN 2014