Michelle Reynolds, PhDrwjms.rutgers.edu/boggscenter/documents/Reynoldspacket11-2-12.pdf · Michelle...

335 George Street P.O. Box 2688 New Brunswick, NJ 08903-2688 Phone: (732) 235-9300 Fax: (732) 235-9330 Website: http://rwjms.umdnj.edu/boggscenter

Michelle Reynolds, PhD

Director of Individual Advocacy and Family Support UMKC Institute for Human Development

University Center on Excellence in Developmental Disabilities Kansas City, MO

Charting a Life Course: A Framework and Strategies for Supporting

Individuals with Developmental Disabilities and Their Families

November 2, 2012 Doubletree Suites, Mt. Laurel

10/24/2012

1

Charting a New Life Course: A Framework and Strategies for

Supporting Individuals with Developmental Disabilities and Their Families

Michelle “Sheli” Reynolds, SIBLING, PhD Missouri Family-to-Family Resource Center

University of Missouri- Kansas CityInstitute for Human Development

University Center on Developmental DisabilitiesNovember 2, 2012

About Me Sibling of 30 year old brother with

developmental disability Director Individual Advocacy & Family Support

UMKC Institute for Human Development 12 years supporting self-advocacy movement

(People First of MO and SABE) Director of Mo Family-to-Family Disability &

Health Information Center

My Family Goals of Presentation Challenge everyone to think beyond their

current beliefs and understanding Show the impact of history on supports and

services now Provide an overview of the role of the family

throughout the lifespan Describe a new agenda for supports to

individuals and their families across the life course

Charting a New Reality

ChartedTraditional or familiar

SlightlyCharted

Tried but not norm

UnchartedNew or

unfamiliar

UnknownNot yet

discoverednorm

• Removes value judgments and blame• Not a continuum, but current or historical options

• Does not imply it is or isn’t available• Allows for comparison of where you are and where to go

Why Uncharted Waters? Journey: Recognizing

life is not static Exploring: identifying

new options and ppossibilities

Navigating together: Sharing responsibility

Our overall compass is “quality of life”

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WHERE WE ARE GOINGWhere we have been………..

Real Lives, Real People….Uncharted Lives

Community

Family

Person

8

Uncharted Life Course

Healthy & Happy

Friends & Family

Financial Stability

What we Know: Charted Disability Services

Community

Family

10

Disability Services

Person with Disability

Unknown Vision for the Future

Healthy & Safe

????????

?????????

Future of Disability Services: Uncharted Lives

Community

Family


12

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3

Vision for a Future

Services

Healthy & Happy

Friends & Family

Supports

Financing

Meaningful Activity

WHO ARE WE TALKING ABOUT?Making Connections, Finding Solutions Together

Who in the Nation are we Talking About?

National Living Natural

Home

Est. Number of Persons with DD 4.7 Million*

Receiving State DD Services (25%) 1.2 Million*

Of th 25% i i S i 528 000 (44%)* 672 000 (56%)

*Lakin, C., Larson, S., Salmi, P. & Webster, A. (2010). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009. Institute on Community Integration, Minneapolis, MN.

Of the 25% receiving Services 528,000 (44%)* 672,000 (56%)

Not receiving State DD Services (75%) 3.5 Million

Total Persons with DD Living in Home in Community 4.17 Million

Another way to look at the numbers….

Total Persons with DD Living in Homes in Community

4.17 Million 87%

Total Persons with DD Living

*Lakin, C., Larson, S., Salmi, P. & Webster, A. (2010). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009. Institute on Community Integration, Minneapolis, MN.

Total Persons with DD Living in Residential

528,000 13%

Total Persons with DD 4.7 Million 100%

FOSTER OPPORTUNITIES TO CREATE A VISION FOR THE FUTURE

For Individuals with Disabilities:

Developmental Disability Act, 2000 Disability is a natural part of the human

experience not diminish the right of individuals with

developmental disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society and experience full integration and inclusion in the

economic, political, social, cultural, and educational, mainstream of American Society.

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Vision for the Future

Uncharted

• Shared Living SpaceC

Where will I Live?

• Co-op• Environmental Adaptations

Slightly Charted

• Independent Supported Living

• Home of Your Own

Charted

• Training Centers• Intermediate Care• Group Homes


Uncharted

• Remote MonitoringAssistive Technology

Who will Support Me?

• Assistive Technology• Time banks• Human-service coops

Slightly Charted

• Self-directed Services• Respite• Micro-boards

Charted

• Staff hired by Provider


Uncharted

• Micro-enterpriseCollege/Tech Schools

What will I do for a living?

• College/Tech Schools• Career• Military

Slightly Charted

• Supported Employment• Volunteerism• AmeriCorps/VISTA

Charted

• Sheltered Workshops• Day Habilitation


Uncharted

• Self-determination• Emotional Well-being• Personal Development

What about my Quality of Life?

Personal Development• Interpersonal Relationships• Physical Well-being• Material Well-being• Social Inclusion • Rights

Slightly Charted

• Meaningful Roles• Normalization

Charted

• Health and Safety

For Families with Members with Disabilities:

FOSTER OPPORTUNITIES TO CREATE A VISION FOR THE FUTURE

Family Support and My Family

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History of the Role of FamilyEra Understanding of Family Disability Services

1800s- Moral blame assigned to parents

Removal from Society

1900s Child damaged families Removal from Familyg y

1950s Burden of Caregiving Specialized TherapeuticCongregate Services

1980s Families seen as systemPositive Coping

Community Group Residential Supports

1990s Families support children to remain in their home for as long as possible

Family Support programs for children living at home

History of the Role of Family

Era Understanding of Family

Disability Services

2010s Families adapt, accommodate and are resilient

-Family is a main constant in the lives of persons with disability

Recognize that there are additional emotional, physical and financial realities

-Families play significant role across the lifespan regardless of service provision

-Families may need supports for the different roles they play in the lives of their family member

Cared about and LovedSelf-determinedIndependent/interdependent Integrated and IncludedMeaningful life

Family Role Across the Life Course

Caregiver and FamilyBehavior Therapist

27Birth--Early Child--School--Transition--------------Adulthood-----------------Aging

Behavior TherapistSpiritual GuiderPsychiatrist or CounselorSocial PlannerLife CoordinatorProtector and Advocate

Family Roles

Caring About

Affection & Self-Esteem

Repository of knowledge

Lifetime commitment

Caring For

Provider of day-to-day care

Material/Financial

Facilitator of inclusion, recreation, spirituality &

meaningful activities

Advocate for support

Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011)

Caring About…… Emotional Support

Affection Unconditional love Emotional closeness

S lf E t Self-Esteem Individuality Unconditional membership role (child, sibling, aunt) Deep connections to other community members

Love, Connections, Belonging, MeaningProtection and safety

Caring about……. (continued)

Repository of knowledge Communication styles and habits Culture, values, beliefs, traditions Interpreter of life story

Lifetime commitment Long-term view Futures planning

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Caring For…… Provide day-to-day care Material or financial support Facilitate inclusion, recreation, spirituality

and meaningful activitiesand meaningful activities Advocate for Services

Negotiator Gatekeeper to services/consent Monitor Quality Complainant BY SUPPORTING FAMILIES

Supporting Uncharted Lives for Persons with Disabilities

What we Know about Families Unconditional love for their child Resilient and accommodating Feeling Alone and Afraid Lack of Information Lack of Information Unknown Vision for Future Hard to Navigate

Objective of Supports for FamiliesTo support families, with all their complexity and diversity, in ways that maximizes their capacity,

strengths and unique abilities

so they can best support nurture love and facilitateso they can best support, nurture, love and facilitate

the achievement of self-determination, interdependence, productivity, integration and inclusion in all facets of community life for their

family members.

-working definition from National Agenda on Family Support Conference, 2011.

New Supports for Families Charted New Charter

Defined by eligibility, services or programs available, or funding

Not a program or based on eligibility, it is needs defined by the families

Caregiver or parent Family is defined functionally; l f blinclusive of siblings, parents

with disabilities, grandparents

Tension between self-advocacy and family support

Enhances opportunities for self-advocacy and self-determination

Crisis, immediate response Preventative, long-termplanning

Supporting caregiver in order to decrease demand on long-term services

Creates a quality of life for person with DD and their family

Individual:-Supports and services to achieve self-determination, interdependence, integration & Inclusion and productivity

Supporting the Individual with DD in the Family System

36

Supporting Family System:-Information and Training-Peer Support Networks-Day-to-Day Supports

Birth--Early Child--School--Transition--------------Adulthood-----------------Aging

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New Charter for Family Supports

DISCOVERY AND NAVIGATIONInformation and

PEER SUPPORT NETWORKS

Emotional Supports

DAY-TO-DAY NEEDS

Supports for Role of Training Supports

pp ppDaily Care/Support

Supporting Individuals and Families Across the Lifecourse

Information and Training Supports:

Knowledge and Skills

• Information on disabilityK l d b t b t Emotional

Supports:Mental Health and

Self-efficacy

InstrumentalSupports:

Day-to-Day Needs

• Knowledge about best practices and values

• Skills to navigate and access services

• Ability to advocate for services and policy change

Navigation: Skills

Chartered Unchartered

Knowledge on how to navigate and access services

Available services and eligibility criteria

Understanding and ability to navigate and access different supports within and outside of disability services

Skills to plan for current needs while focusing on a vision for the future

Person-centered/family-centered planning

Individual Education Plans

Building social capital and relationships, developing economic self-sufficiency, long term planning

Ability to advocate for services and policy change

Understand rights and responsibilities

Enhance skills to make a change for self, family and for services and systems


Emotional Supports:Mental Health and

Self-efficacy

• Parent-to-Parent SupportInformationand Training

Supports:Knowledge and Skills

InstrumentalSupports:

Day-to-Day Needs

• Self-Advocacy Organizations• Family Organizations• Sib-shops• Support Groups• Professional Counseling• Non-disability community

support


Information Emotional

Instrumental Supports:Day-to-Day Needs

• Respite/Childcareand Training

Supports:Knowledge and

Skills

Supports:Mental Health and

Self-efficacy

• Adaptive equipment• Home modifications• Financial assistance• Cash Subsidies• Short/Long term planning

with family

REFOCUSING TO RESPOND TO INDIVIDUALS AND FAMILY VISIONS

Life Course Perspective and Formal Service Systems

10/24/2012

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What is the Life Course Perspective? Looks at areas across the life span

Not disconnected stages Each life stage influences the next

Complex interplay of p p y Biological Behavioral Psychological Social Environmental factors

Policy Brief: A New Agenda for MCH Policy and Programs (2009)

An Example: Health Causes of Heart Disease

Adult Lifestyle Model Change current behaviors

Smoking Diet Diet Exercise Alcohol consumption

Life Course Perspective Biological and Social Factors Starting at pregnancy and building throughout

lifespan

Kuh, D. et al (2003) Life course epidemiology.

Life Course Perspective: Humans are capable of making choices

and creating their own life journeys, within opportunities and constraints

Looks at the impact of historical penvironmental events and early life experiences on adulthood.

Humans are interdependent, with family as the primary arena for experiencing and interpreting the social world

Hutchison, E.D. (2007) A Life Course Perspective

Supporting the Individual“system of supports and services

to achieve self-determination, interdependence, integration,

inclusion and productivity”

Applying Life Course to Disability Systems

46Birth--Early Child--School--Transition--------------Adulthood-----------------Aging

Supporting the Family“system of supports and services

for discovery and navigation, connecting with others and to support

the caregiving/support role”

TRAJECTORY AND TRANSITIONLife Course Perspective

Life Course: Basic Concepts Trajectory: Long-term pattern of stability and

change, which usually involves multiple transitions.

Transition: Change in roles and statuses that represents a distinct departure from prior roles represents a distinct departure from prior roles and statuses.

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Trajectory of Life with Disability

Community

Family

Person with

What are you doing to support a Uncharted Life??

49Birth-----Early Child----School----Transition---Adulthood-----Aging


Community

Family

Disability Services


Uncharted with Supports

Charted

Community

Family

Disability Services


Community

Family


Vision for Community Living

- New realities now that living environment disconnected from supports

- New roles and responsibilities for self-advocates and families

- New Possibilities

Community

Family

Disability Services


Community

Family


Vision for a Meaningful Day

- New generation growing up alongside peers- Post-secondary education and Careers- Economic Self-Sufficiency- Increased access to social and recreation- Valued role in community

Community

Family

Disability Services


Community

Family


Vision for a Quality of Life

-Building own family and relationships-Community connections provide quality assurance -Fostering self-advocacy and self-determination skills leads to safety and protection-Focusing on meaning of life beyond interventions and concrete day-to-day supports

TURNING POINTSLife Course Perspective

Life Course: Basic Concepts Turning Point: Life event that produces a

lasting shift in the life course trajectory Life event: significant occurrence involving a

relatively abrupt change that may produce serious and long-lasting effectsserious and long lasting effects

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Decrease Negative Turning Points Lack of relief from financial, physical and

emotional strains Constant crisis with loved one or family Negative social stigma Negative social stigma Barriers within “systems” that destroy

a vision for the future (policies and culture)

Increase Positive Turning Points Learning from others who “walk the

walk” (peer-to-peer exchange) Seeing it to believe it!! (Successful Lives) Training on How and Educating on Why Training on How and Educating on Why Starting before change, transition or crisis Consistent and on-going message

Fostering Expectations for the Future!!!

Moving Beyond the “What” to “Why and How”

What Why

Information on disability

Specific diagnosis and interventions, therapies, and services

Personal stories of hope, possibilities, and opportunities for now and the future

Knowledge about • Housing • Inclusion and integrationKnowledge about best practices, values, and philosophy

Housing• Education• Employment• Sexuality• Health care• Early childhood• Recreation

Inclusion and integration• Productivity and

meaningful life• Self-Determination• Social Capital• Natural Supports• Family/person-centered

thinking

Strategies for Turning PointsCharted Uncharted

How it is provided • In-person Workshops• Directories• Booklets• Websites• Support Groups

• Webinars• Community Conversations• Blogs, chat rooms• Videos, pictures, personal

testimonies• Support Groups testimonies• Social Media• Text messages

CHARTING THE LIFE COURSEUsing the Life Course Guide

Employment Across the Life Course

Start young Start small Match to interests and abilities Make it a lifetime habit

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Young Child

Chores around the house

Helping neighbors Helping neighbors or grandparents

Volunteering at church or in community

School Age

School based clubs or organizations Classroom Aid or Office Helper Helping a neighbor, grandparents, family Community based (scouts church service) Community based (scouts, church, service)

Transition Age

IEP goals focusing on employment

Part Time Jobs Internships Extra curricular

activities Volunteer Job exploration Paying for College

Ben’s Transition Story

Wanted More for Ben Identified 2 places he

could volunteer School provided staff p

support Local public transportation Community connections Now part of adult life

Adult Life

Career Volunteerism Military Military College Business Owner Virtual Work AmeriCorps

Aging

Retiring from work or day activities

Staying connected in th itthe community

Making new friends as old ones are gone

Adjusting to new life realities

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Fostering Self-Determination

Community

Family

Person with Di bilit

Learning to be more self-determined starts early and continues throughout the life course

67Birth-----Early Child----School----Transition---Adulthood-----Aging

Disability

Community

Family

Disability Services


Uncharted with Supports

Charted

Self-Determination Across the Life Course

• Promote making choices• Encourage exploring possibilities• Promote reasonable risk taking• Promote reasonable risk taking• Promote advocacy• Help develop self esteem• Help set goals and plan• Help understand the disabilities/special needs• Encourage problem solving

National Gateway to Self-Determination (2011)

Housing Identify different options for where my

child might live when they are an adult/after high school

Who does my child want to live withy Discuss different living options & pros and

cons of each with them Visit different housing environments

(apartments, dorms, own home, family home modified)

Services, Supports, Financial

Open a joint bank account for the youth Limited bank account/debit card Give plenty of opportunities to practice Help them learn about deciding how to Help them learn about deciding how to

spend money Involve child in meetings about services

and supports Talk about how money earned from

employment might affect benefits such as social security

Social & Recreation Explore their interests so

they can become involved in groups, clubs and other social opportunities of their choosingg

Introduce to new people and places

Support the development of friends and connections in the community

Help your child build “social capitol”

Health & Wellness Help your child understand their disability,

special healthcare need, everyday health needs Teach how to interact with doctors and medical

professionals, including how to explain their own needsT h h t t d /h t t h l h th Teach what to do/how to get help when they are not well

Begin helping your child to manage their own medications

Let your child pay for medical care using their insurance card

Talk to them about their reproductive health and responsibilities

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Safety & Security Teach the youth what to do in an

emergency Practice drills – fire, tornado, etc. Give them opportunities to learn how to Give them opportunities to learn how to

get around town – ride the bus, cross the street safely, etc.

Give them tools to be able to communicate their needs, problems, etc. to others

Family Support Begin shifting

responsibility to the youth in whatever areas you can

Start letting go of some Start letting go of some of the control and decision making power

Connect your child to a self-advocacy or leadership group

Begin viewing your child as an adult!

DIRECT SERVICES, FAMILIES AND PROFESSIONALS

Building Capacity to Support “Visions”

Supporting ALL Families

Individuals and Individual

receiving formal

Individual receiving formal supports outside

families not receiving formal

services and supports

gsupports in a

family member home

Own home

supports outside of the family home

Provider

Partnering to Support Individual VisionsFamily Formal Supports

Affection & Self-Esteem

Repository of knowledge

Lifetime commitment

Provider of day-to-day care

Material/Financial

Facilitator of inclusion, recreation, spirituality & meaningful activities

Advocate for support

Building Capacity to Support “Visions”

Understanding history of field Focus on self-determination and civil rights Caregiving vs. supporting Becoming part of the fabric of life Becoming part of the fabric of life Balancing outcomes of individual and family Utilizing the knowledge, love and

experience of families Working in others home and environments

10/24/2012

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Examples of Supporting Relationship and Culture of Family

Ensure Cultural and Family Traditions: environment, food, schedules, values and beliefs, and spirituality

Support participation in Family Holidays and E t Events: holidays, funerals, vacations, birthdays, weddings, graduations

Facilitate reciprocal connections with family members: communication, gifts, special activities

Building “family” to fulfill lifelong commitment roles

BUILDING COMMUNITY CAPACITY TO SUPPORT “VISIONS”

Life Course Perspective

Building Capacity of COMMUNITY STARS

Community

Family


Types of Activities to Build Capacity Training and education to support change Opportunities to learn, explore, make

mistakes Brainstorming and Problem Solving Groups Brainstorming and Problem Solving Groups

Community of Practice Community Conversations

Peer-to-peer exchange Professionals Direct care workers Families Utilizing New Waivers/Services

DISABILITY POLICYLife Course Perspective

Vision for All People with Disabilities

Community

Developmental Disability Assistance and Bill of

Rights Act, 2000• Enjoy the opportunity to

live independently, E j lf d t i ti Family


• Enjoy self-determination, • Make choices, • Contribute to society• Experience full integration

and inclusion in the economic, political, social, cultural, and educational, mainstream of American Society.

10/24/2012

15

Vision for Services for People with Disabilities

Community

F il

NJ Division of Developmental Disabilities

-Health and safety while respecting the rights of individuals

Family


-Community-based supports

-Full, integrated, competitive employment

-Individual choice, natural relationships and equity in the provision of supports and services

Pediatrician, Families and Friends, Faithbased

Policies & Systems: Integrated, Coordinated Vision

IDEA Part C, Parents as Teachers, Headstart

School Special Education

Community

Family School, Special Education, Recreation

Vocational Rehab, Employment, College, Military

Disability Services, Housing, College, Careers

Retirement, Aging System

Family


Moving Policy to Support Uncharted Lives

Community

Family

Community

Family

Disability Services


Family


Policy to Support Changing Cohorts“Lag between social change and the

development of public policy to respond to new circumstances and the needs that arise

with social change AND vice versa.”

- Disability Civil Rights Movement- Individuals with Disabilities Education Act- Medicaid Waiver

Hutchinson, E. (2007), Hareven, T. (2000), Riley, (1996).

Real Life and Policy Individualized and Flexible enough to

meet on-going needs of different and evolving “cohorts”

Written from “now” and not building on g“old”

Encourages and integrates multitude of formal and informal supports

Provides opportunities to build the capacity to implement the new policy or paradigm

MAKING CONNECTIONS:FINDING SOLUTIONS TOGETHER

Charting a New Life Course

10/24/2012

16

Making Connections:Finding Solutions Together

Supports WITHIN AND BEYOND the disability service system across the lifespan

Help persons with disability and their families PLAN FOR POSSIBILITIES and dreams before crisis life-transitions and futurebefore crisis, life transitions and future

Define EXPECTATIONS, roles and responsibility of service system, individuals, their families and their community

Provide PREVENTIVE SUPPORTS to lessen the intensity, frequency and long-term nature of crisis services.

Our Uncharted Life

Life isn’t about how to survive the survive the storm, but

how to dance in the rain.

-unknown

ReferencesBen-Shlomo, Y., & Kuh, D. (2002). A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives. International Journal of Epidemiology, 31: 285-293.Bigby, C., & Fyffe. C. (2012). Services and Families Working Together to Support Adults with Intellectual Disability. Proceedings of the Sixth Roundtable on Intellectual Disability Policy.Bundoora: La Trobe University.Calkins, C., Wehmeyer, M., Bacon, A., Heller, T., & Walker, H.M. (2011) Introduction to the special issue on scaling up efforts to promote the self-determination of people with developmental disabilities. Exceptionality, 19(1):2-5.Dalley, G. (1988). Ideologies of caring: Rethinking community and collectivism. Basingstoke: MacMillan.Developmental Disabilities Assistance and Bill of Rights Act of 2000. Public Law 106-402 U.S. Code 42 2000 § 15001.Family Support Agenda (2012). Building a national agenda for supporting famiies wit a member with intellectual and developmental disabilities. Fine, A., Kotelchuck, M., Adess, N., & Pies, C. (2009). Policy brief. A new agenda for MCH policy and programs: Integrating a life course perspective. Martinez, CA: Family, Maternal, and Child Health Programs Contra Costa Health Services.Hutchison, E.D. (2007). A Life course perspective. In Hutchison, E.D., Dimensions of human behavior: The changing life course(4th ed, pp. 1-38). Thousand Oaks, CA: SAGE.Kuh, D., BenShlomo, Y., Lynch, J., Hallqvist, J., & Power, C. (2003). Life course epidemiology. Journal of Epidemiology and Community Health, 57(10): 778-783.

References (continued)Missouri Family to Family (2012). Charting the life course: A guide for individuals, families, and professionals. Kansas City, MO: Institute for Human Development, University of Missouri-Kansas City.Lakin, C., Larson, S., Salmi, P., & Webster, A. (2010). Residential services for persons with developmental disabilities: Status and trends through 2009. Institute on Community Integration, Minneapolis, MN.National Gateway to Self-Determination (2011). Research to practice in self-determination series. National Training Initiative on Self-Determination and the gAssociation of University Centers on Disabilities.Hareven, T. (2000). Families, history, and social change: Life course and cross-cultural perspectives. Boulder, CO: Westview Press.Riley, M. W., & Riley Jr, J. W. (1996). Generational relations: A future perspective. Aging and Generational Relations: Life-course and Cross-cultural perspectives, 283-291.Seltzer, M. M. (1985). Informal supports for aging mentally retarded persons. American journal of mental deficiency, 90(3), 259.Turnbull, A., Turnbull, R., Erwin, E., Soodak, L., & Shogen, K. (2011). Families, professionals, and exceptionality: Positive outcomes through partnership and trust. Boston MA: Pearson.

Contact InformationSheli [email protected]

R f rReferencesBen-Shlomo, Y., & Kuh, D. (2002). A life course approach to chronic disease epidemiology: conceptual models empirical challenges and interdisciplinary perspectives International Journal of Epidemiology models, empirical challenges and interdisciplinary perspectives. International Journal of Epidemiology, 31: 285-293.Bigby, C., & Fyffe. C. (2012). Services and Families Working Together to Support Adults with Intellectual Disability. Proceedings of the Sixth Roundtable on Intellectual Disability Policy.Bundoora: La Trobe University.Calkins C Wehmeyer M Bacon A Heller T & Walker H M (2011) Introduction to the special Calkins, C., Wehmeyer, M., Bacon, A., Heller, T., & Walker, H.M. (2011) Introduction to the special issue on scaling up efforts to promote the self-determination of people with developmental disabilities. Exceptionality, 19(1):2-5.Dalley, G. (1988). Ideologies of caring: Rethinking community and collectivism. Basingstoke: MacMillan.Developmental Disabilities Assistance and Bill of Rights Act of 2000. Public Law 106-402 U.S. Code 42 2000 § 150012000 § 15001.Family Support Agenda (2012). Building a national agenda for supporting famiies wit a member with intellectual and developmental disabilities. Fine, A., Kotelchuck, M., Adess, N., & Pies, C. (2009). Policy brief. A new agenda for MCH policy and programs: Integrating a life course perspective. Martinez, CA: Family, Maternal, and Child Health Programs Contra Costa Health ServicesPrograms Contra Costa Health Services.Hutchison, E.D. (2007). A Life course perspective. In Hutchison, E.D., Dimensions of human behavior: The changing life course(4th ed, pp. 1-38). Thousand Oaks, CA: SAGE.Kuh, D., BenShlomo, Y., Lynch, J., Hallqvist, J., & Power, C. (2003). Life course epidemiology. Journal of Epidemiology and Community Health, 57(10): 778-783.

R f r ( ti d)References (continued)Missouri Family to Family (2012). Charting the life course: A guide for individuals, families and professionals Kansas City MO: Institute for Human Development families, and professionals. Kansas City, MO: Institute for Human Development, University of Missouri-Kansas City.Lakin, C., Larson, S., Salmi, P., & Webster, A. (2010). Residential services for persons with developmental disabilities: Status and trends through 2009. Institute on Community Integration, Minneapolis, MN.g , p ,National Gateway to Self-Determination (2011). Research to practice in self-determination series. National Training Initiative on Self-Determination and the Association of University Centers on Disabilities.Hareven, T. (2000). Families, history, and social change: Life course and cross-cultural perspectives. Boulder, CO: Westview Press.Riley, M. W., & Riley Jr, J. W. (1996). Generational relations: A future perspective. Aging and Generational Relations: Life-course and Cross-cultural perspectives, 283-291.Seltzer, M. M. (1985). Informal supports for aging mentally retarded persons. American j l f l d fi i 90(3) 259journal of mental deficiency, 90(3), 259.Turnbull, A., Turnbull, R., Erwin, E., Soodak, L., & Shogen, K. (2011). Families, professionals, and exceptionality: Positive outcomes through partnership and trust. Boston MA: Pearson.

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