Doctors For "Our" Kiddos

One of the best things that you can do for your child is find someone that knows what you are dealing with.  Chances are that person is not at your local pediatricians office.  We have an amazing pediatrician and we are very blessed with her support, but even she admits that she is not a specialist on Down syndrome-and I do not expect her too be.  As my children's mother it is my job to be their expert.  When I need guidance I research what I can and present my findings to the professionals.

You will hear a lot of people say...."don't worry just treat them like the rest of your children".  This statement is partially true in my opinion.  We most certainly treat Emma like the rest of our kids. She enjoys all the same things our other kids do.  She plays dress up, she sings and dances, she climbs and slides, she has fits and gets in trouble like the rest of our kids do.  She goes to Mother's Day Out just like the other kids did, and she does all the other countless things our other kids do or did.  She also has 8 therapy sessions a week, hypothyroidism, cardiologist visits once a year, orthodontist appointments at the age of 2, labs drawn every 3 months, has a restricted diet and is on a  neurodevelopmental program unlike the rest of our kids. With that said...Emma's life will always be a little different than theirs.  Because of the 21st chromosome it is very important that Emma gets bio medical support.  We believe that we have to have someone that understands exactly what Down syndrome is and how we can help Emma's body function at it best.

There are not a lot of physicians that truly understand this about our kids, so I have decided to compile a list of ones that I feel are good choices.  Because we use Erica Peirson I will start with her.  Our appointments with Dr. Peirson are done via Skype.

Erica Peirson, ND

2161 NE Broadway St.
Portland, OR 97232
drpeirson@gmail.com

www.downsyndrometreatment.net



Norm Schwartz, MD
Ph: 414 351 5772
Fax: 414 351 5760
4200 W. Good Hope Road
Milwaukee, WI 53209 USAinfo@inwellnesstoday.com
www.inwellnesstoday.com



David Berger, MD, FAAP
3405 W. Fletcher Ave

Tampa, FL 33618

(813) 960-3415
http://www.wholisticfamilycare.com/



The Franz Center
3160 Southgate Commerce Bld. #64
Orlando FL 32806
Answers@DrCorneliaFranz.com
Phone 407-857-8860
Fax 407-857-7099
http://drcorneliafranz.com/joomla/



(for thyroid)
Raphel Kellman, MD
150 East 55th Street, 6th floor
New York, NY 10022
(212) 717-1118
http://raphaelkellmanmd.com/

Recognize the value of biomedical treatment of children and adults with Down syndrome Please sign.
https://www.change.org/petitions/down-syndrome-specialty-clinics-recognize-the-value-of-biomedical-treatment-of-children-and-adults-with-down-syndrome

Medicaid Waiver

Forty-four (44) states and the District of Columbia have received waivers to provide home- and community-based services to people with developmental disabilities (DD). Depending on each state's DD definition, these waivers may cover services to people with autism.

Colorado, Indiana, Maryland, and Wisconsin have waivers specifically addressing autism. They all limit waiver services to children. The first three states' waivers are only for children with autism. Wisconsin provides intensive in-home autism treatment under two broader waivers, one for children with DD and the other for children with social and emotional disorders. In Indiana and Wisconsin, children eligible for autism-specific services are also eligible for services under other Medicaid waivers.

All 50 States where interviewed about their programs for persons with developmental disabilities and asked the same 10 questions:                             

1. What Programs Are Available To Assist People With Disabilities in your state?
2. What number do you call to start getting services?
3. Who Qualifies For Assistance? (disability, age, and financial requirements)
4. How many people are currently waiting for services, and how many years should they expect to wait?
5. How many people are currently receiving services?
6. What assistance is available while you wait?
7. Does the state offer group homes and supported living?
8. Are there still state owned institutions? How many people are living in institutions
9. Do you have choice in providers?
10. What is the process to become a provider?

You can see the answers to these questions by clicking on the state you have questions about.

http://medicaidwaiver.org/index.html

Which State Is Best?

 

 

States Get Ranked On Disability Services

By Michelle Diament May 2, 2013

Arizona is the place to be when it comes to services for people with intellectual and developmental disabilities, according to a new national ranking.

The listing is part of a report set to be released Thursday by United Cerebral Palsy, which ranks disability services in all 50 states and the District of Columbia.

Specifically, the advocacy organization weighed each state’s track record in promoting independence and productivity, ensuring quality and safety, keeping families together and reaching people in need.
In addition to Arizona, the highest ranked states were New Hampshire, Oregon, Vermont and California.

Top performing states were largely clustered in the Northeast and on the West Coast. As in past years, the standouts represented both big and small states as well as those with high and low tax burdens. What’s more, the amount they spent to provide community supports for individuals with disabilities varied.

Mississippi was ranked last for the seventh straight year. Arkansas, Texas, Illinois and Virginia filled out the bottom five.
The report — which is produced annually — is largely based on data from 2011, the most recent available.

States are increasingly shifting to a focus on supports within the community, the analysis found. Currently, 38 states indicate that at least 80 percent of residents with developmental disabilities that they serve live in the community. These same states also devote at least 80 percent of their resources designated for this population toward community supports. That’s up from 14 states in 2007.
While some states outshined others the report authors caution that there’s work to do nationwide. Fewer than a third of those with developmental disabilities are employed competitively in the vast majority of states. And, waiting lists for residential services remain high, with 268,000 people in limbo compared to 138,000 in 2007, the report indicates.

Where to Start-Oregon

OREGON INTERVENTION PROGRAM

The Oregon Department of Education contracts with local agencies to provide a statewide system of free services for young children with developmental delays and disabilities and their families, including:

• Early Intervention (EI)--Individually designed services for children birth to three and support for parents to enhance children's physical, cognitive, communication, social or emotional and/or adaptive development;
• Early Childhood Special Education (ECSE)--Specially designed instruction for children ages 3 to the age of public school eligibility including physical, speech/language, mobility, social or emotional, and others.

http://www.ode.state.or.us/search/results/?id=252

http://www.ode.state.or.us/gradelevel/pre_k/eiecse/dyhcfinalenglish.pdf

Oregon Department of Education
255 Capitol Street NE   Salem, OR 97310-0203

503) 947-5600  |  Fax: (503) 378-5156

University of Oregon Early Intervention Program

http://eip.uoregon.edu/



EASTER SEALS

Easter Seals Oregon provides exceptional services to ensure that children and adults with autism and other disabilities or special needs and their families have equal opportunities to live, learn, work and play in their communities.

503-228-5108 (voice)
503-228-1352 (fax)
800-556-6020 (toll-free)

5757 SW Macadam Ave
Portland OR  97239 

http://or.easterseals.com

MEDICAID WAIVER PROGRAM:

OR ICF/MR Comprehensive Residential

Provides day hab-prevocational-supported employment, group care homes for adults, group care homes for children, respite, OT, PT, speech/hearing/language, comprehensive in-home support, crisis/diversion, environmental accessibility adaptations, family training, Hab-adult foster care, hab-children's DD foster care, Hab-supported living, non-medical transportation, specialized medical equipment and supplies for individuals w/DD, MR ages 0 - no max age

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/OR0117R0400.zip


OR Medically Fragile (Hospital) Model

Provides homemaker/chore, respite, PT/OT/speech and language, behavioral consultant, environmental accessibility adaptations, family training, non-medical transportation, special diets, specialized medical equipment and supplies, translation for medically fragile individuals ages 0-17

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/OR40193R0200.zip


OR Behavioral (ICF/MR) Model

Provides homemaker/chore, respite, PT/OT/speech and language, behavioral consultant, environmental accessibility adaptations, family training, non-medical transportation, special diets, specialized medical equipment and supplies, translation for individuals w/MR/DD ages 0-17

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/OR40194R0200.zip

TEFRA: (Tax, Equity and Fiscal Responsibility Act of 1982)

Under the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), states may provide Medicaid coverage to children with severe disabilities, disregarding their family income, if these children require care at an institutional (hospital, nursing home or intermediate care facility) level.

When a child receives extended care in an institutional setting, family income is disregarded as a qualification for Medicaid. The TEFRA State Plan Option makes it possible to do the same for a family whose child requires care at the level provided in an institution, but who choose to care for their child at home. Currently, 18 states and the District of Columbia have chosen to implement the TEFRA State Plan Option. Because states vary widely in the availability of institutional care for children and the clinical criteria for admitting children to these institutions, the numbers of children and youth with special health care needs (CYSHCN) who receive Medicaid benefits under this option also varies widely from state to state.

Please check with your state office to see if TEFRA is offered in your state.

GENETICS/M.D. SUPPORT IN OREGON

Down Syndrome Program
The Child Development and Rehabilitation Center
Doernbecher Children's Hospital
700 S.W. Campus Drive, 7th floor
Portland, OR
Phone: 503-346-0640 or 877-346-0640



CENTRAL OREGON DS NETWORK

Their mission is to promote a positive understanding of disability and community inclusion, as well as be a source of support, information, and education for families and professionals.

CODSN will accomplish this mission by empowering and supporting families and individuals who have been touched by disability. We will work to increase education, promote public understanding and acceptance, and encourage full inclusion of individuals with differences in our community.


6390 Southwest Nighthawk Avenue,
Redmond, OR 97756
541-548-8559
codsn1@yahoo.com
http://www.codsn.org/


DS ASSOCIATION OF SOUTHER OREGON

In 1979 a group of parents whose children had Down syndrome formed an organization called the Down Syndrome Parent Association which, in 1993, became the Down Syndrome Association of Southern Oregon. The vision of the founding parents was to provide networking and resources for families and promote positive awareness in our communities.  DSASO remains steadfastly committed to enhancing and expanding the lives of individuals with Down syndrome and plays a vital role in providing education, outreach and support to families throughout the entire Southern Oregon region.

The Goals of DSASO are to:P.O. Box 5404,
Central Point, OR 97502
541-776-9805
mail@dsaso.org
http://www.dsaso.org/


DOWN SYNDROME NETWORK OREGON

Down Syndrome Network Oregon is a faith-based support group that provides comfort and acceptance for families, friends and individuals with Down syndrome. It is our goal to use community outreach events to create a vision of hope and awareness to demonstrate that every life brings value to the world.

P.O. Box 248,
Marylhurst, OR 97036
503-636-4860
imailto:info@dsnor.org
Paula@dsnor.org
http://www.dsnor.org/



NORTH COAST DOWN SYNDROME NETWORK

Provide support and resources
Encourage active participation in the community
Foster positive attitudes
Help individuals with Down syndrome reach their full potential

“The mission of the North Coast Down Syndrome Network

is to promote community awareness and to build a supportive network
to empower all families and individuals with special needs.”

P.O. Box 456, Nehalem, OR 97131
503-368-6892
northcoastdsn@nehalemtel.net
http://www.northcoastdsn.org/



NORTHWEST DOWN SYNDROME ASSOCIATION

Mission
Create and nurture a loving and inclusive community celebrating every person with Down syndrome.
The NWDSA will accomplish this mission by empowering and supporting families and individuals who have been touched by Down syndrome. They will work to increase education, promote public understanding and acceptance, work toward full inclusion, and defend the civil rights of individuals with Down syndrome. Their vision also embraces professionals and the cross disability community. Their statement of values is the core of their organization and the basis for how they make decisions to support their mission.
They believe that relationships are the cornerstones of their organization and that they should be both honored and nurtured.


P.O. Box 9127,
Portland, OR 97207
503-238-0522
503-238-0522
sholl2000@aol.com
ww.nwdsa.org



WILLAMETTE VALLEY DS ASSOCIATION

P.O. Box 8098,
Salem, OR 97303
503-769-7403 (Patie)
wvdsa.ptaylor@gmail.com
keriprince@gmail.com


OREGON COUNCIL OF DEVELOPEMENT DISABILITIES

Throughout the year, the Oregon Council on Developmental Disabilities listens to people like yourself who have a strong interest in the welfare of Oregonians with developmental disabilities and their families. They hear from you at forums, conferences and town hall meetings...in the media, on the Internet, through Oregon Perspectives and a host of other ways. They hear from:

• Self Advocates frustrated by the lack of rural and intercity accessible transportation.
• Direct Care Providers who receive poor pay for demanding jobs.
• Case Workers swamped with paperwork and heavy case loads.
• Families and Individuals who feel policy making does not reflect their needs.
• And many others with individual concerns and issues.

What they hear shapes what they do. Every five years they build a strategic plan based on what they hear from you and the issues facing families and individuals. The plan focuses their efforts in areas where they can be most effective and produce positive results for the largest number of people.

540 24th Place NE
Salem, OR 97301-4517
Email: ocdd@ocdd.org
Calling from Salem:
(503) 945-9941
Calling from elsewhere in Oregon:
(800) 292-4154 (Oregon)
Calling from Outside Oregon:
(503) 945-9941
FAX: (503) 945-9947
Facebook:  http://www.facebook.com/OregonCouncilDD
http://ocdd.org/index.php/ocdd/


THE ARC OF OREGON

The Arc of Oregon, together with its network of members and affiliated chapters, advocates for the rights and full community participation of all children and adults with intellectual and developmental disabilities.

General Information:Info@arcoregon.org

Marcie Ingledue, Executive Director
Email: Marcie.Ingledue@arcoregon.org

Rose Rowe , Program Assistant
Email: Rose.Rowe@arcoregon.org

Tiffany Tombleson, Administrative Assistant
Email: Tiffany.Tombleson@arcoregon.org

Elaine Friesen-Strang, Program Director
Guardianship, Advocacy & Planning Services (GAPS)
Email: Elaine.Strang@arcoregon.org

Lisa Hawke, Bingo Manager
The Arc of Oregon Facility - Eugene
Email: Lisa.Hawke@arcoregon.org

http://www.arcoregon.org/index.htm