Leadership
An Online Newsletter for
December
15,2003 Volume I Issue 3
Family Support
Project: What’s New?
The ND
Family Support Project continues to collect data on outcomes identified by the
ND families as important.
Most families know if they are
satisfied with the availability and quality of health care services in their
community. What happens in one town may not take place in other
communities. Most families need to
concentrate on their own situation.
Information about the big picture can help families work together for
system change.
Several partners have forwarded
data about health outcomes in ND. Family Voices of ND shared the results of an
informal phone survey conducted with about 30
families. Only 10 or 33% knew what Health Tracks was and only 5
used ND Health Tracks for their child.
ND Health Tracks
(formerly EPSDT) is a preventive health program free for children age 0 to 21
who are eligible for Medicaid. This includes children with disabilities who
receive family support services. Health Tracks pays for screenings, diagnosis,
and treatments to prevent health problems from occurring or becoming worse. HT
also pays for teeth braces, glasses, hearing aids, vaccinations, counseling and
other important health services. Health tracks helps families make appointments
and find transportation.
Tammy Gallup Millner, director of ND
Children’s Special Health Services pointed out that in ND we have Healthy
Steps, Health Tracks and Right Track, three separate programs with different
purposes and similar names. No wonder families get confused!
The
second survey (State and Local Area Integrated Telephone Survey for Children
with Special Health Care Needs) was conducted by phone in ND by the Federal
Bureau of Child and Maternal Health. The results show
that most ND families are satisfied with health care services. About
8.6% of the 7526 respondents reported that their children have significantly
greater health care than peers. That’s 644 ND families.
The
reason stated most often for why health care was delayed or foregone was (5.8%)
the family did not have the money to pay the provider. About 21.7% of
responding families indicated that their child’s special health care needs
created a financial problem for the family
A bout 4.7% of families were not receiving dental care. Again cost was
sited as the biggest factor.
CSHS is
working hard to address these factors among eligible families. CSHS has
additional questions about health care services for families of children with
special health care needs and is planning a new five-year survey of ND
families. CSHS will look at the SLAIT data and take input from ND families
about what questions to ask in their upcoming survey.
Other
Action: Project staff also attended the IDEA committee meeting via IVN
network. Along with
Bids are
being accepted for a conference planner for the upcoming collaborative
conference. Contracts with the DHS and DPI to fund the conference are being
developed.
Independent
Living Centers
North
Dakota families have so many options for support in raising a child with a
disability. One option available to a growing number of ND families are
services from a Center for Independent living. What is a Center for
Independent Living?
Centers for Independent Living (CIL) are
non-residential, private, non-profit,
community-based organizations providing services and advocacy by and for
persons with all types of disabilities and their families and communities. ND
has four primary sites:
Freedom
Resource Center for Independent Living in Fargo/Moorhead.
Option
Center for Independent Living in East Grand Forks.
Independence
Inc. A
resource center for independent living in Minot.
Dakota
Center for Independent Living in Bismarck with branches in Mandan and Dickinson.
Centers
for Independent Living were first started by people with disabilities who were
dissatisfied with living in hospitals or nursing homes merely because of their
disability. They decided to start a unique business that would be run by people
with disabilities who knew what it took to really help someone establish the
life they wanted outside of an institutional setting. This movement soon swept
the country and today Independent Living Centers can be found in all 50 states.
Although
families have traditionally looked to schools, human service agencies or adult
service providers for support CILS offer some unique perspective and services
that families may want to pay attention to when building a life for/with a
young person with a disability.
Each CIL
in North Dakota provides four core services most of which are FREE:
Information & referral for all persons with disabilities.
Peer support from staff members most of whom have a disability
Individual and system advocacy by helping to educate legislators.
Assessments to build on personal skills and obtain support for needed
services.
Areas of
support that CILS might offer a family include:
Instruction
in daily living skills
Maintaining
living skills
Assistance
to find housing
Help to find
employment
Help with
transportation
Access to
recreational facilities
Money
management
CILS in ND offer or sometimes develop many
innovative services that are community based to support persons with
disabilities. For example:
Computers - The Dickinson CIL
recently had businesses donate their older computers and refurbished them for
re-use by persons with disabilities.
Transportation - The Dickinson CIL
also established a voucher ride-program by collaborating with the ND Center for
Persons with Disabilities.
Senior Companions- CILs often link people
to this program that in collaboration with Lutheran Services, connects seniors
to other seniors with disabilities, providing added support and companionship.
Representative Payee Services - Provides an advocate to
help manage the complex Social Security system and teach consumer money skills.
There is a fee for this service.
Rights Education: - Independence Inc. in
Minot offered a summer transition program for students that included an online
course on how people with disabilities may exercise their rights. The course
was developed by the ND Center for Persons with Disabilities and can be
available to young people statewide.
Partners in Policymaking Program
- Consumers and families learn how to advocate
for system change. To find out more
about Partners in Policymaking, read the article on page 2. For more information on how your family could
benefit from CILS call the consumer toll free number at
1-800-489-5013.
Leadership
Topics : Partners in Policymaking
We learn much of what we know by watching other
people. Do you know someone who seems to use just the right words, handles
conflict calmly, has a plan and carries it out?
If you
have met parents in ND who have these skills, chances are they are a graduate
of the Partners in Policymaking training program offered through the Dakota
Center for Independent Living.
What is
Partners in Policymaking?
Partners in Policymaking is an
internationally-known program that has successfully trained thousands of
advocates in the field of disabilities.
Every September, the North Dakota Governors Counsel sponsors Partners in
Policymaking in ND. This exciting and innovative leadership program:
Trains
participants in the most effective strategies for successful advocacy. Members who have graduated from the class
gain a great deal of personal confidence when learning advocacy skills. They
build on abilities and strengthen personal communication skills.
Provides
state-of-the-art knowledge, from national leaders, about today’s disability
issues. This information base creates a
spring-board to action for parents who have children with disabilities. Not only do they come away with more
knowledge about disabilities in their community, they also develop life long
friendships.
Creates
partnerships between participants and policymakers at all levels of government Families have
opportunities to form new, positive relationships with decision makers in local
schools, educating mayors and city councils, working with the legislators, and
even influencing federal laws.
Gives
participants important tools required to play a leadership role in policy
development and advocacy within their communities. According to
Brings
adults with disabilities together with parents who have a child with
disabilities. Bringing these two groups together has been a powerful experience for both
groups. It is important for families to
see the kinds of achievements and experiences that adults with disabilities
experience. Lifetime friendships are formed and a community of advocates for
disabled persons continues to grow in North Dakota.
Partners in Policymaking is a FREE,
two-day training course that meets once
every month, from September through April.
Participants hotel stay, meals, travel expenses, and child care are
paid. Partners in Policymaking starts in
September, but applications are accepted throughout the year. Training sessions are usually held in
communities from which the majority of students enroll.
PIP
Content includes:
History of
disability
Disability
rights movement
People first
language
Building
inclusive settings
Inclusive
education
Team
meetings
Supported/Inter-dependent
living
Supported/competitive
employment
Personal
futures planning
Assistive
technology
Advocacy
Supporting
behavioral growth
State/Federal
Legislation
Vision
Building
Community
Organizing
Alliance
Building
For more information contact
One Stop
Centers
What if, no matter where you lived in ND, you could access a one-stop
center that was prepared to offer your family all of the information and
support you might need to raise a child with a delay, disability or chronic
health condition?
One-stop service models have
been growing nationally. Are one-stop services available for ND families?
Should they be?
If a family wanted to meet
another family who has a child with a disability would they be matched with a
veteran family locally or referred to the Family to Family office at UND? If a
family needed information about their child’s educational rights under IDEA,
would they be offered several resources or be told to contact the Pathfinder
Center in Minot. If the family was looking for respite care would the center
provide the service, or refer the family to a provider in the next town? What
if you could go to one place to access all the services you needed instead of
being referred to multiple agencies?
The concept of a one-stop
center may have been part of the original idea behind the creation of Human
Service Centers. ND is currently divided into 8 regions each of which has a
Human Service Center. Ask ND professionals today if a one-stop center works and
you will get a mixed response.
Some administrators believe in
the concept and strive to align resources and meet diverse needs. Others claim
that the needs of families are too diverse and the array of support options too
numerous for this model to work. They site the rural/frontier nature of ND and
the distances between towns as an insurmountable barrier to the one-stop model.
Last year the Department of Health
and Human Services’ Administration and Children and Families awarded 31
one-year planning grants of $100,000 to help states create a seamless system of
services for underserved families of people with developmental disabilities.
The eventual goal of these projects is to plan for the establishment of
“one-stop shopping”---centers where coordinated, outcome-oriented and
family-centered services would be delivered. These centers would offer families
one point of entry to establish eligibility for many services and develop a
comprehensive plan to preserve and strengthen the entire family.
Because ND is a continued recipient of a
family support grant as a third tier project no application for a one-stop
center was submitted. One stop centers have become the primary focus of funding
from the Administration on Developmental Disabilities, replacing the previous
‘family support” projects. North Dakota will be in a position to decide if we
think this kind of model will work here. This would require players to move
from collaboration on projects of interest to coordination of services. It
would require intense planning and discussion and challenge players to resolve
turf issues.
Would the results be better or less
confusing for families? Could we make such a concept work? Do we really want
to?
Family
Stories: Family Experiences As Partners
Finding
opportunities to learn more about your child’s disabilities and how to best
advocate for his or her needs is something every parent with a child with a
disability hopes to do. This is a story of two
ND parents who found Partners in Policymaking to be a solution to challenges
they had encountered.
Ardeen graduated from the Partners in
Policymaking Program in 1998. She has a
teenage son with a disability and was working in the field of disabilities when
approached about taking the class. I
agreed to go because it would be fun to spend a free weekend in a Bismarck
hotel and have time to shop! After the
first day, I knew I was hooked on the program and I forgot all about the
shopping! She now laughs about her
motive for going to the program. It
changes your life and I wish everyone knew about this opportunity!
For eight weekends, one weekend a month
between September and April, Ardeen came to Bismarck to learn more about the
field of disabilities and to become an advocate in disabilities. A different national speaker came each month
and Ardeen says she learned so much from each speaker.
Friendships were quickly formed as
participants began to share their stories.
You don’t feel like you’re the only one going through this
experience. I met another person who had
a child with a similar behavior disorder as my son. She helped me understand how this disorder
manifested itself and how it can affect the family. For the first time I began to see the
disability through my sons eyes. I went
home and hugged my son and explained how I finally understood about his daily trials.
Since starting the Partners program,
Ardeen feels more empowered with how to handle school situations. She has worked with Congressmen and if time
allowed, she would be more active in the local legislature. I wish everyone knew how really simple it
is to work with legislators to get an amendment passed. Sure it takes time and a coordinated effort,
but it’s not as difficult as I once thought!
Ardeen continues to be keep in touch with some of
the graduates in the class of 1998.
Partners in Policymaking offers graduates an opportunity to attend a two
day summer course called, “Advanced Organizers Training”. This class is designed to help graduates
update skills and keep in touch.
I’ve really enjoyed these summer
classes. The graduates have some input
about the topic we would like more training in. One year we chose to do a grant writing
class that was very helpful.
In the past few years, summer classes
included such topics as; understanding personality and communication types,
building computer skills, and using person-centered planning tools.
Besides the wonderful training, Ardeen
finds the summer courses to be an opportunity to catch up with good
friends. It’s so fascinating to see
the change in other people as they become empowered. This class will definitely
change your life!
Melissa is a parent who is currently taking the
Partners class. She has a 12 year old
daughter with a disability and was
unhappy with her daughter’s special needs program at school. Like Ardeen, she joined the class thinking it
would be a nice chance to spend the night in Bismarck and get some shopping
done. After the first night, I was
emotionally drained. This is not a
vacation, but a life altering experience.
Melissa’s felt her daughter wasn’t being
challenged in school and she wanted to be a better advocate, but didn’t know
where to begin. Now I’ve learned that I have the power to influence my
daughter’s education. So we’ve
re-written her IEP to have her fully
included in class. She was being pulled out of class so often that she began to
resent going to school. Now that I’ve
learned how to work with the school system, my daughter is having a much better
school experience and best of all is now referring to all her new friends at
school. I think of all the time that was
lost when she was younger and I would like more parents to know about this
program so they have the opportunity to get on board when their children are
young.
Melissa finds it comforting to see the
adults with disabilities go through the class. When my daughter is 18, I’m
going to encourage her to take the class.
I’ll be so empowering for her and
I’ll have the comfort of knowing that she has the skills necessary to meet the
challenges of adulthood.
Participation in a course like Partner’s
in Policymaking is a real commitment for families because of the time. When you
look ahead at the rest of your child’s life, attendance at a Partner’s in
Policymaking is an investment worth making. Negotiating for what your child needs takes skill and can be easier than
you think.
Next
issue: Building a Circle of Support for Your Family or Child. Many families struggle to
find and balance both generic and disability specific supports. We are looking
for stories about every-day supports that families create to meet the needs of
children with special needs. If you are a parent and have a story or suggestion that
you would be willing to share please
contact project staff toll free at LEADERSHIP 1-800-233-1737 or send a brief
email with your story or thoughts to Cathy Haarstad at:
Announcements
The ND
Department of Public Instruction will be holding a Transition Institute in
Bismarck on March 8-10th of 2004. Jonathan Mooney a 26 year-old college
graduate with LD and ADHD will be one of the exciting key-note speakers. Mr.
Mooney will discuss his experiences in education from middle school through college
and talk about accommodations, barriers and lifelong learning.
The North
Dakota Department of Human Services' Children and Family Services Division has
been awarded an $83,545 federal grant to provide educational and training
vouchers to help older foster children and young adults become self-reliant.
Families usually help young people get started in life after high school. Many
foster care children as they exit the foster care system do not have the family
support they need to help with housing, higher education, employment. A large
percentage of foster care youth have disabilities. Eligibility: "Age
out" of foster care at 18 or be adopted at age 16, and be younger than 21.
Medicaid
Service Limits: Effective Jan. 1, 2004 these service limits will impact all ND families
receiving Medicaid, including kids under the HCBW.
Chiropractic
visits - 12 per year
Chiropractic
x-rays - 2 per year
OT Evaluations- 1 per year
OT -
Visits -20 visits per year; (for services
delivered in a clinic or outpatient setting. This limit does not apply to
school-based services for kids).
Psychological
Evaluation - 1 per year
Psychological
therapy visits - 40 per year
Psychological
testing - four hours per year
Speech
therapy visits - 30 per year; (applies to
services delivered in a clinic or outpatient hospital setting. This limit does not apply to school-based
services for kids).
Speech
evaluation - 1 per year
PT
evaluation - 1 per year
PT visits - 15 per year; (applies to
services delivered in a clinic or outpatient hospital setting. This limit does not apply to school-based
services for children.)
Eyeglasses
and exams for Individuals 21 and older - once every 3 years. (Pre-authorization to exceed limits is available when medically
necessary).
The North
Dakota Center for Persons with Disabilities (
The ND
Family Support Project is a collaborative project designed to enhance family
support in ND. Partners include: The Family to Family Network, the Arc, Upper
Valley, the ND Department of Public Instruction, the ND Department of Human
Services, the Pathfinder Family Center, the ND Protection & Advocacy
Project, the Federation of Families for Children’s Mental Health, Family
Voices, and many more persons committed to supporting ND families who are raising children with
special needs. We’re on the web at www.ndcpd.org/n2k.