A Survey of ResourcesA Survey of Resources

What’s really useful for parents of children with

disabilities?

What’s really useful for parents of children with

disabilities?

Needs of ParentsNeeds of Parents

Support and comfort Information Services Advocacy Sense of competency and

empowerment

Support and comfort Information Services Advocacy Sense of competency and

empowerment

WELCOME TO HOLLANDby

Emily Perl Kingsley.c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like

this......When you're going to have a baby, it's like planning a fabulous

vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas

in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The

stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for

Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

WELCOME TO HOLLANDby

Emily Perl Kingsley.c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like

this......When you're going to have a baby, it's like planning a fabulous

vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas

in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The

stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for

Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would

never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But

after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland

has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all

bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had

planned." And the pain of that will never, ever, ever, ever go away... because the loss of

that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about

Holland.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would

never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But

after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland

has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all

bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had

planned." And the pain of that will never, ever, ever, ever go away... because the loss of

that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about

Holland.

IsolationIsolation

Connecting parents to other parentsSupport groups: formal and informal

Connecting parents to supportive professionalsMedical, therapists, counselors, etc

Connecting parents to service providersLocal non-profits, stand alone services

Connecting parents to other parentsSupport groups: formal and informal

Connecting parents to supportive professionalsMedical, therapists, counselors, etc

Connecting parents to service providersLocal non-profits, stand alone services

Where to Find Support Groups

Where to Find Support Groups

Local groups Statewide organizations

Local groups Statewide organizations

What professionals have to offer

What professionals have to offer

Information Referral Services and/or Treatment Practical suggestions Support advocacy

Information Referral Services and/or Treatment Practical suggestions Support advocacy

Your Access to ServicesYour Access to Services

How do you find them?Professional referralOther parentsOnline information

How do you evaluate them?Professional accreditationOther parents and professionals

How do you find them?Professional referralOther parentsOnline information

How do you evaluate them?Professional accreditationOther parents and professionals

ServicesServices

Department of Human Services http://www.arkansas.gov/dhhs/homepage.html

Division of Behavioral Health http://www.arkansas.gov/dhs/dmhs/ Developmental Disabilities Services

http://www.arkansas.gov/dhs/ddds/NewWebsite/index.html Early Intervention Services (through DDS children’s

services) Medicaid/TEFRA https://www.medicaid.state.ar.us/

Department of Education http://arkansased.org/ Special Education http://arksped.k12.ar.us/ Early Childhood Education Transition services

Social Security Administration SSI (Medicaid)

http://www.socialsecurity.gov/pgm/links_ssi.htm

Department of Human Services http://www.arkansas.gov/dhhs/homepage.html

Division of Behavioral Health http://www.arkansas.gov/dhs/dmhs/ Developmental Disabilities Services

http://www.arkansas.gov/dhs/ddds/NewWebsite/index.html Early Intervention Services (through DDS children’s

services) Medicaid/TEFRA https://www.medicaid.state.ar.us/

Department of Education http://arkansased.org/ Special Education http://arksped.k12.ar.us/ Early Childhood Education Transition services

Social Security Administration SSI (Medicaid)

http://www.socialsecurity.gov/pgm/links_ssi.htm

Arkansas Department of Human Services(DHS Divisions)

Aging & Adult

Services

Child Care

Children &

family

County Ops

Services for the

Blind

Volunteer- ism

Youth Servic

es

Developmental Disabilities Services

Medical Services

Behavioral Health

ARKids FirstState Plan Medicaid

State HospitalArkansas Health CenterRegional Mental Health Centers• RSPMI• CASSP• ADAP

Human Development Centers

(HDC)ArkadelphiaBoonevilleConwayAlexanderJonesboro

Community Supports

• ACS Waiver• Day Programs• Early Intervention /Pre-school• Family and Individual Supports

Other DHS Divisions

Local providers of servicesLocal providers of services

Clinical and therapeutic services Counseling services Direct services Referral and information services

Clinical and therapeutic services Counseling services Direct services Referral and information services

AdvocacyAdvocacy Arkansas Parent Training and Information

Center http://www.adcpti.blueskywebsites.com/

Disability Rights Center http://www.arkdisabilityrights.org/

Developmental Disabilities Council http://www.ddcouncil.org/

Specialized associations: autism society <autism-society.org> mental health <nami.org> Down Syndrome <ndsccenter.org>

National Organizations: TASH <tash.org> CEC cec.sped.org> NADD <thenadd.org> NPND <php.com>

Arkansas Parent Training and Information Center http://www.adcpti.blueskywebsites.com/

Disability Rights Center http://www.arkdisabilityrights.org/

Developmental Disabilities Council http://www.ddcouncil.org/

Specialized associations: autism society <autism-society.org> mental health <nami.org> Down Syndrome <ndsccenter.org>

National Organizations: TASH <tash.org> CEC cec.sped.org> NADD <thenadd.org> NPND <php.com>

Things to consider about the professionals in your

life

Things to consider about the professionals in your

life First connection to information and services Are they helpful? Do you get support? Do you get information? Are they competent? What if you aren’t happy with your professional’s

service?

First connection to information and services Are they helpful? Do you get support? Do you get information? Are they competent? What if you aren’t happy with your professional’s

service?

Who can be an advocate?Who can be an advocate?

“Never doubt that a small group of thoughtful, committed citizens can change the world: Indeed it’s the only thing that ever has.”

Margaret Mead

“Never doubt that a small group of thoughtful, committed citizens can change the world: Indeed it’s the only thing that ever has.”

Margaret Mead

Some thoughts for Parents as AdvocatesSome thoughts for

Parents as Advocates

Be informed—information is key to effective advocacy

Communicate clearly and be credible Persistence and perseverance are essential Choose your battles—know your bottom line Keep records—document, document! Focus on the goal—eyes on the prize A sense of humor and a cooperative

attitude will carry you a long way

Be informed—information is key to effective advocacy

Communicate clearly and be credible Persistence and perseverance are essential Choose your battles—know your bottom line Keep records—document, document! Focus on the goal—eyes on the prize A sense of humor and a cooperative

attitude will carry you a long way

Empowerment Is:Empowerment Is:Feeling confident in your ability to get what

you needBecoming more independent in your effortsKnowing your rightsBeing able to locate needed services and

supportsActing on complaintsOrganizing for changeTaking charge of your own life and situation

Feeling confident in your ability to get what you need

Becoming more independent in your effortsKnowing your rightsBeing able to locate needed services and

supportsActing on complaintsOrganizing for changeTaking charge of your own life and situation