1. A Survey of Resources What’s really useful for parents of children with disabilities?

2. Needs of Parents  Support and comfort  Information  Services  Advocacy  Sense of competency and empowerment  Support and comfort  Information  Services  Advocacy  Sense of competency and empowerment

3. WELCOME TO HOLLAND by 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.

4. 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.

5. Isolation  Connecting parents to other parents  Support groups: formal and informal  Connecting parents to supportive professionals  Medical, therapists, counselors, etc  Connecting parents to service providers  Local non-profits, stand alone services  Connecting parents to other parents  Support groups: formal and informal  Connecting parents to supportive professionals  Medical, therapists, counselors, etc  Connecting parents to service providers  Local non-profits, stand alone services

6. Where to Find Support Groups  Local groups  Statewide organizations  Local groups  Statewide organizations

7. 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

8. Your Access to Services  How do you find them?  Professional referral  Other parents  Online information  How do you evaluate them?  Professional accreditation  Other parents and professionals  How do you find them?  Professional referral  Other parents  Online information  How do you evaluate them?  Professional accreditation  Other parents and professionals

9. Services  Department of Human Services http://www.arkansas.gov/dhhs/homepage.html 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/ 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 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/ http://arksped.k12.ar.us/  Early Childhood Education  Transition services  Social Security Administration  SSI (Medicaid) http://www.socialsecurity.gov/pgm/links_ssi.htm

10. Arkansas Department of Human Services (DHS Divisions) Aging & Adult Services Child Care Childre n & family County Ops Services for the Blind Volunteer - ism Youth Services Developmental Disabilities Services Medical ServicesBehavioral Health ARKids First State Plan Medicaid State Hospital Arkansas Health Center Regional Mental Health Centers RSPMI CASSP ADAP Human Development Centers (HDC) Arkadelphia Booneville Conway Alexander Jonesboro Community Supports ACS Waiver Day Programs Early Intervention /Pre-school Family and Individual Supports Other DHS Divisions

11. Local 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

12. Advocacy  Arkansas Parent Training and Information Center http://www.adcpti.blueskywebsites.com/ http://www.adcpti.blueskywebsites.com/  Disability Rights Center http://www.arkdisabilityrights.org/ http://www.arkdisabilityrights.org/  Developmental Disabilities Council http://www.ddcouncil.org/ http://www.ddcouncil.org/  Specialized associations: autism society mental health Down Syndrome  National Organizations: TASH CEC cec.sped.org> NADD NPND  Arkansas Parent Training and Information Center http://www.adcpti.blueskywebsites.com/ http://www.adcpti.blueskywebsites.com/  Disability Rights Center http://www.arkdisabilityrights.org/ http://www.arkdisabilityrights.org/  Developmental Disabilities Council http://www.ddcouncil.org/ http://www.ddcouncil.org/  Specialized associations: autism society mental health Down Syndrome  National Organizations: TASH CEC cec.sped.org> NADD NPND

13. 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?

14. 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

15. Some thoughts for Parents as Advocates Some 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

16. Empowerment Is: Feeling confident in your ability to get what you need Becoming more independent in your efforts Knowing your rights Being able to locate needed services and supports Acting on complaints Organizing for change Taking charge of your own life and situation Feeling confident in your ability to get what you need Becoming more independent in your efforts Knowing your rights Being able to locate needed services and supports Acting on complaints Organizing for change Taking charge of your own life and situation