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50th Anniversary of the DD ACT—October 31 The 50th Anniversary of the Developmental Disabilities Assistance and Bill of Rights, also known as the DD Act, is an important piece of legislation that was created to support and enhance the lives of people with developmental disabilities and their families. The purpose of the DD Act is to “assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, integration and inclusion in all facets of community life.” In 2000 Congress added Title II, Families of Children with Disabilities Support Act, to promote and strengthen implementation of comprehensive state systems of support services for family members providing care. For more information about the DD Act, visit: http://www.acl.gov/Programs/AIDD/DD_History/index.aspx

CENTENNIAL CARE—Is there a chill in the air?

Inside this issue:

School Health

Program

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The Gift of Music 3

Mom’s Night Out 3

Tips for Caregivers 4

CDD Information Network

4

HEROS Program 4

Resources 5

Caregiver tips 5

Special points of

interest:

Centennial Care

Program

Recognition

Home holiday

musical event

Caregiver

Tips

Winter 2013

9th Edition

Medically Fragile News Happy Holidays!!!

The Medically Fragile Program wishes all of

you a happy and healthy holiday season.

University Centers for Excellence on Developmental Disabilities Education,

Research, and Services

Centennial Care will become effective January 1, 2014. By now, everyone on program should have enrolled in a Managed Care Organization, MCO.

I’m sure there have been mixed emotions for many of you with the uncertainty of changes and of what lies ahead. Please remember that you are only selecting a new Medicaid provider. The Medically Fragile Waiver does not become part of Centenni-al Care until July 1, 2015. Hopefully, when it be-comes effective, all of the changes will truly benefit our population. Let’s please try to remain positive—Change can be good!

http://www.centennialcare.net/

Please note the link at the Human Services Division for Centennial Care above. Remember: After the first of the year when Centennial Care becomes effec-

tive, you have the option of changing to another MCO within 90 days.

Editor: Lynn Griffin

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Family Advisory Board (FAB) Update

School Health Program When your child transitions from one program to another challenges exist. To get all of paper-work together can be daunting. The FAB has developed a partnership with Albuquerque Public Schools to develop a worksheet to be assured that when your child attends school that all of the essentials are in place to help your child have a smooth transition and successful school year. This is not specific to APS. Families on program statewide were surveyed to investigate accessi-bility of school services with a 95% response. The findings were very interesting. Families described the services their child received as well as challenges they encountered. Even though the children on program have complex medical needs, the vast majority participate in center based education at a public school. It was encouraging that parents want their child to be involved in their community in many aspects. The intention of the MF Program Worksheet is that it be utilized with any school throughout the state. In order to have enough time to address areas of need, transition planning should begin 6-9 months prior to the actual transition date. This extra time is necessary to accommodate the needs of the student who is medically fragile. Conversation around timelines should be discussed. It might be appropriate to introduce the worksheet at a parent -teacher conference in the fall. This would help guide supports and services that may be needed for the upcoming school year. This document was created with input from parents to help everyone not only with school situations but the valuable information regarding you/your child can be utilized with other providers as well. It is posted on the MF website. http://www.cdd.unm.edu/mfcmp/. Your Case Manager can also provide you with a hard copy. If you feel you need assistance with the form, Your Case Manager will work closely with you and the school to help you.

On that note, in November Case Manager, Maggie Nechvatal and Christy Barden, Program Director, embraced the op-portunity to represent the work of our Family Advisory Board (FAB) along with the efforts of MFCMP program and state agencies, to show the strong support provided to all of our consumers. The work evolved into a poster board presenta-tion for the annual AUCD Conference, Association of University Centers Disabilities. This years theme was Promoting Inclusion in an Increasingly Diverse World.

During the 28 year history of the Medically Fragile Case Management Program (MFCMP), there have been advances in medical technology. Technology along with the progress made by the disability rights movement allowed access to public education for all children with intellectual disabilities including children who are medically fragile to a Free and Appropriate Public Education. The Medically Fragile Case Management Program (MFCMP) fosters partnerships to assist students with complex medi-cal needs to successfully navigate transition periods they encounter in the school setting. A multi-disciplinary collabo-rative approach is used to identify and remove barriers to accessing education. This presentation specifically addresses the tools developed to assist students and families access to the educational system from early childhood through high school. Together they developed an innovative process of oversight and evaluation so that children, with complex medical needs, have appropriate supports that they need to transition to and through the school setting. This was ex-cellent representation of the work of our program. We appreciate all of their hard work. Congratulations on their suc-cess! The poster board is posted on our website.

http://www.cdd.unm.edu/mfcmp/

The Center for Development and Disability is a member of University Centers for Excellence in Developmental Disabili-ties (UCEDDs). Since 1963, UCEED’s have worked towards a shared vision that foresees a nation in which all Americans, including Americans with disabilities, participate fully in their communities. Independence, productivity, and communi-ty inclusion are key components of this vision. With research, demonstration, and personnel preparation funding from the US Department of Education (ED), National Institutes of Health (NIH), Health Resources and Services Administration (HRSA), Centers for Medicare and Medicaid Services (CMS), and Centers for Disease Control and Prevention (CDC)-among others-UCEDDs have undertaken numerous projects in areas of importance to people with disabilities across the lifespan and their families, such as in health promotion and prevention, education, employment, self determina-tion, family support, national and community service, and autism.

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Mom’s Night Out (MNO) - We Continue to Grow! As we continue to try to grow on connections in our community, we gathered for another MNO in Farmington in our northwestern region part of the state in September. It was wonderful to gather with new families who I’ve never had the opportunity to meet face to face. One Mom commented that I actually have a face. Many of you read my emails and newsletters sent and I haven't had the opportunity to meet and greet. Everyone seemed to enjoy getting acquaint-ed. Let’s hope it continues and grows. We have a contact person for this region who would love to see this continue:

Rebekah Deane: rebekahdeane@gmail.com

THE GIFT OF MUSIC by Lori Steward

The holidays can be both lots of fun but also challenging for families who have children who are medically fragile. Some-times we get caught up in the preparations, shopping, deco-rating, etc. and run out of energy before really enjoying the spirit of the season. Caring for our children with complex needs in the midst of all the activity can add another layer of stress.

A few years ago, a couple of families in Albuquerque got to-gether to enjoy the spirit of the season with each other in an

environment that worked for our children. Mary Kay Hoppe, a certified mu-sic therapist with Albuquerque Public Schools, provides music therapy to some our

children in the school setting. Mary Kay offered to lead a Christmas time music get-together at our home so the families could get together and enjoy the music of the season in a setting that worked for the needs of our kids. So for the last several years, we have had our “Annual Music Par-ty!” Our title sounds grand, but ac- tually the afternoon is low-key and very flexible, and the focus is on our children enjoying par-ticipating in music and sociali- zation. All the kids partici-pate in whatever way they are able from playing the pi-ano, to hand over hand play- ing on a xylophone, to shaking a percussion instru- ment and lots of joyful vocalizing and singing. We have a bit of food and drink but things are kept simple (and most of the kids don’t eat orally so that part is not im- portant to them).

This gathering, where we focus on and cele-brate our children through the gift of music, is a highlight of our family’s Christmas season.

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Medical Home Portal - Check it out!

Another new site for New Mexico resources provided by the Information Network

Here you will find a wealth of information, support, tools, and more to help you care for your child or patient with special health care needs and to collaborate with others to achieve optimal outcomes. Use the drop down menu for NM resources. Their goal is to help you learn how to better care for your child with chronic and complex conditions, and become a more effective partner in your child’s care.

There is a tab for Parents & Families Here are some sections that focus on various aspects of assuring the best outcomes for your child.

Learning About Diagnoses Whether your child has been recently diagnosed, or you are looking for the latest information about your child’s care, this page will help you find reliable resources and information.

Caring for Children with Chronic Conditions Filling prescriptions, working with the insurance company, or simply keeping up with your child—dealing with daily life is often overwhelming. Find tools and suggestions for getting organized, advocating for your child, planning for the future, and taking an occasional break from it all.

Education & Schools Schools can provide necessary services and support for children with special health care needs. Learn the terms, laws, and processes so you can work more effectively with schools to provide the best educational experience for your child.

Navigating Transitions With Your Child Youth, teens, young adults, and their families will find answers to some of their questions about growing up and be-coming independent, as well as suggestions for preparing for these changes.

http://www.medicalhomeportal.org/ - There is a drop down menu on the left for the state of NM.

The CDD Information Network PROVIDING LIBRARY SERVICES AND COMMUNITY RESOURCE CONNECTIONS

THROUGHOUT THE STATE OF NEW MEXICO

The Center for Development and Disability (CDD) Information Network strives to provide high quality library services,

as well as connections to community resources. We offer a wide array of disability related materials and services for

individuals with disabilities, families, healthcare professionals, school personnel, advocates, case managers, and others.

http://www.cdd.unm.edu/infonet/

The CDD Information Network Library Website will have a new look and you'll be able to search the catalog from mo-bile devices.

Here is the new link to the Information Network Library catalog. http://207.67.203.83/C95037

NM Health Exchange Invests in HEROS Program

Community health workers from UNM Health Sciences Center (HSC) will be fanning out across the state in an effort to

help rural New Mexicans better understand healthcare reform, thanks to a $375,000 grant from the NM Health Insur-

ance Exchange.

Staff from the HSC’s Health Extension Rural Offices, known as HEROs, will work with a variety of community groups to

educate them about changes and new insurance options under the federal Affordable Care Act. HEROs are located in

communities statewide and the staff members live and work in the communities they serve.

For more information please visit the website:

http://hsc.unm.edu/community/heros/

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We’re on the web!

http://www.cdd.unm.edu/

mfcmp/

Visit us on Facebook!

https://www.facebook.com/

CDD.MFCMP

National caregiver month was in November. We recognize all of you who work tirelessly on a daily basis to provide the unconditional love, care and support that you do. Appreciating all of the sleepless nights, that goes without saying, stress and worry that occurs on a daily basis and still carrying on and forging forward to provide all the best you possibly can. Recognizing the disruption in your home with all of the comings and goings of health care professionals. It’s not an easy life. Please give yourself a pat on the back and be sure to take time to care for yourself! With respect and admiration to all of you!!

Caregiver Action Network http://caregiveraction.org

This website has a lot to offer. There are forums you can join with various different topics. Various resources are also available.

10 Tips for Family Caregivers

1. Seek support from other caregivers. You are not alone!

2. Take care of your own health so that you can be strong enough to take care of your loved one.

3. Accept offers of help and suggest specific things people can do to help you.

4. Learn how to communicate effectively with doctors.

5. Caregiving is hard work so take respite breaks often. 6. Watch out for signs of depression and don't delay in getting professional help when you need it.

7. Be open to new technologies that can help you care for your loved one.

8. Organize medical information so it's up to date and easy to find.

9. Make sure legal documents are in order.

10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

http://caregiveraction.org/resources/ten-tips/

HOPE – There will be moments or days that you may feel hopeless—like nothing will change for the better. Remember to honor your hopes as best you can, grieve for what is lost, but also create new hopes, post pictures or words that inspire you and help you focus on the positive.

“Learn from yesterday, live for today, hope for tomorrow.” - Albert Einstein

UNM Health Sciences Center

Center for Development &

Disability

2300 Menaul Blvd. NE

Albuquerque, NM 87107

Phone: 505-272-2757

Toll Free: 1-800-675-2910

Fax: 505-272-8100

Lynn Griffin Family Specialist 505-934-1350

legrifin@salud.unm.edu

SibKids Yahoogroup—

SibKids is the internet's first listserv for young brothers and sisters of people with special health, developmental, and emotional needs. SibKids is also a great place to meet other young brothers and sisters from around the world. On SibKids, members talk about their siblings with special needs, favorite music, friends, local sports teams, school—just about anything! SibKids members say they enjoy talking about the good parts and not-so-good parts of having a sib with special needs with other kids who "get it!" After all, no one knows what it is like to be a sib of a kid with special needs better than another sib! Parents and adult sibs are welcome to join SibKids as long as they primarily listen and learn from the young members. Having adults on the list helps keep SibKids safe. All kids and parents must read the SibKids Rules of the Road! Siblings Support Project—http://siblingsupport.org/connect

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Genetics Home Reference Guide

The website is a comprehensive guide to understanding genetic conditions with basic information and clear language

and links to online resources. http://ghr.nlm.nih.gov/handbook

RESOURCES