North Dakota Center for Persons with Disabilities
Leadership
An Online Newsletter for
January
15, 2003
Volume
1, Issue 4
Inside
This Issue:
Project: Conference Update
Opportunities:
Topics: Fitness, Obesity & Kids with Disabilities
Policies: IDEA Reauthorization
Family Stories: Building A Circle of Support
Partners: The Arc, Upper Valley
Announcements:
Family Support Project:
Conference Update
What would it take for your family to pack
their bags and travel to a conference?
An opportunity to do just that is coming up this spring. Planners of the
Building New Ties and Enhancing Family Support Conference are hoping
that you will join other ND families at the Doublewood Best Western, in Fargo
on June 10-12 . This conference will bring families and professionals together
in a way that is fun, informative and too good to miss.
Speakers for the conference are still
being recruited but here is a peek at some of the topics and opportunities that
are being planned.
- An opportunity to hear
national speakers in early intervention, family support, education,
behavior intervention, health care,
and transition.
- Best practices that child
care centers, schools and communities in ND can use to help young people
with disabilities make friends.
- Using technology (e.g.
providing speech therapy using the Internet) to overcome educational
barriers in rural communities.
- New opportunities for
families to manage or self-direct services.
- Involving families in
building school-wide programs for positive behavioral support.
- Best practice in helping
young people with disabilities grow up and make healthy choices for
fitness, diet and lifestyle.
- Providing early
intervention in natural environments.
- Round table discussions
with the folks responsible for developing family support policies in ND.
Best of
all the conference will be FREE!
For more
information contact: Cathy Haarstad toll Free at ND Family Support Project 1-800-233-1737.
Opportunities:
Most
families find themselves learning new parenting skills as they raise a
child with special needs. It can be harder for parents to learn skills in leadership.
Family members are often kept busy with home and work activities as they
struggle to provide the extra support needed by their children.
The
North Dakota Center for Persons with Disabilities (
If you
have never considered serving on a board or committee before, this opportunity
offers special benefits. The committee
meets face-to-face about 3-4 times a year. Meetings are held on Saturdays from
10 to 2 PM and families are reimbursed for travel, motel, and meal expenses.
participating member receives a stipend that they may use to cover costs
related to time and child care. Members with disabilities who need personal care
assistance also receive compensation for caregivers who travel with them.
What do
members of a consumer advisory council do?
Families bring their unique perspective to
- View or try out the latest technology or best practice materials
developed at the center.
- Meet people with disabilities who are employed and successful in
living outside of institutional settings.
- Recommend a line of research or service to benefit families in ND.
- Share stories about what kinds of solutions or strategies work best
for your family.
- Identify areas of unmet need in ND.
- Help with grant writing, editing or development if interested.
- Become familiar with support services and systems across ND.
- Receive leadership training in serving on a board or committee.
- Receive newsletters and updates on
Families
who are interested in this leadership opportunity may contact
Leadership Topics : Fitness,
Obesity and Kids with Disabilities
Research
shows that at an early age, children with Down Syndrome metabolize calories
much less efficiently than other people of the same age (Medlin, 2001). For
that reason we have always tried to provide our daughter who has Down Syndrome
with a healthy diet and lifestyle.
Imagine
our surprise when weight control became an issue not for our daughter with Down
syndrome but for her older sister who has ADHD and Learning Disabilities. As
her sister’s previous high activity level and rapid metabolism slowed during
adolescence she was left with impulsive eating habits that led to a 40 pound
weight gain in one year.
Concerns
with fitness and obesity are not limited to families who have children with
disabilities. Research indicates that many American children are over-weight.
In addition to the current lifestyle of many ND families (i.e. children play
more video games, play outdoors less often during winter months and tend to eat
more fast foods), families who raise children with special needs often face
unique challenges that make it easier for young people with disabilities to put
on excess weight, particularly when children face physical or intellectual
challenges.
We know
that when compared with the general population, people with disabilities:
- Have higher rates of chronic conditions
- Take part less often in wellness activities
- Make fewer healthy choices
- Have less health insurance
- Are less likely to access healthcare when on their own (Mercer 2003).
Research
gathered by the Rural Institute in Montana suggests that poor nutrition may
be a risk factor for secondary conditions:
- Weight problems
- Bladder dysfunction
- Fatigue
- Bowel dysfunction
- Depression
- Stamina problems
- Dental/oral hygiene problems
- Sleep problems/disturbances
In other
words lifestyle and dietary challenges can lead to additional problems for
children with disabilities over time.
As students
with disabilities move into more independent living situations, parents have
little influence on nutrition, exercise, and health habits. It is critical for
families and transition teams to prepare students to make lifestyle choices
that will help them meet personal or work
goals.
Whether
a student plans to move into a supervised setting, college dorm or an
apartment, after high school, the student will be responsible for his or her
own health and wellness. Success in living on one’s own, having the stamina to
work or go to school, manage relationships and participation in community life
may be jeopardized if a student is unable to get enough sleep, move around
freely because of excess weight or suffers from low self esteem or depression
linked to an inactive or unhealthy lifestyle.
Information:
Because many ND families are concerned about diet and health, the n2k
website http://www.ndcpd.org/n2k has extensive links to practical
information that families can use to help research and build a healthy diet for
children.
Lifestyle Change: Dr. Samuel Klien, MD,
from Washington University School of Medicine says that the first thing parents
should do is to decrease television viewing and sit-down activities at home.
Watching TV, being on the computer should be limited. Parents should also set
up and model increased physical activity with their children. This means going
out for walks on a regular basis after dinner, or doing family activities that increase physical
action.
Parents
of children with special needs know these steps are important but may find them
difficult to do particularly if they are working two jobs or using much of
their energy to provide therapy for their child at home or just make ends meet.
What solutions are available? What has
your family tried? What works or is helpful. If you have ideas or suggestions
as a parent or professional please contact: LEADERSHIP toll free at
1-800-233-1737 or
Partners: The Arc, Upper Valley
The
Arc, Upper Valley (AUV) offices located in Grand Forks, is a member-run
organization whose mission is to improve the quality of life for children
and adults with cognitive, intellectual and related developmental disabilities
through education and advocacy. Like other Arc chapters in ND the AUV is
affiliated with the Arc of the United States and has access to national
resources and information.
Why belong? There are several reasons
for joining the AUV. Look at the many advocacy and training opportunities the
AUV provides to get a sense of who they are and what they offer. The AUV:
1. Is a volunteer organization run by families
with opportunities to participate in leadership roles by serving on boards or
committees or helping with local fund raising or service activities.
2. Is
associated with the Arc of the United States with access to informational
resources and a 50 year history of organized grass-roots advocacy that has
successfully opened schools and communities to people with disabilities.
3. Offers
opportunities to meet other families by working on projects or through referral
to other agencies.
4. Teaches
families to speak up for people who may not be able to articulate their needs
to olicymakers.
5. Presents the united voice of many families
when advocating for system change rather than a single voice which is easily
ignored.
6. Offers services designed to meet the unique
needs of families
- An informational website www.thearcuppervalley.com
- A family resource guide – that
lists the benefits, supports, services for ND families
- Public awareness events that promote a positive view of people with DD
(local buddy walk)
- An annual state-wide conference on family support
- A support group for mothers with intellectual disabilities
- A Legislative Forum and Legislative Action Center that provides
families with key information on legislative issues.
- Sib-shops – a program for the brothers and sister (ages 7-12) of
children with disabilities
- An awareness essay contest for
5th grade classrooms called Circle of Friends
- Family education workshops. For example: GOOD Grief – Why do I feel so
angry, sad, mad?
- Referrals for families who seek help with the IEP process
7. Provides
information and training resources that address the needs of individual across
the lifespan in a one-stop model as your child ages.
8. Is
committed to ongoing advocacy to support inclusion and continuation of home and
community based services through ND. System change that the AUV has
helped to bring about in ND includes.
- A class-action lawsuit that resulted in the development of home &
community based services through ND and closed or reduced programs at
institutions in San Haven or Grafton.
- Increased wages for direct service professionals during a period of
extreme fiscal restraint.
- Legislation for a Supplemental Needs Trust to help ND families with financial
planning
The AUV
is funded through membership donations as well as income from a local thrift
shop and local donations. Annual membership dues are $25.00 for a family. New
AUV initiatives include:
A task force
working with the Aging Caregiver Project in the area of future planning.
Physical and
spiritual inclusion of persons with disabilities for faith based communities.
Call 1 (877) 250-2022 for more
information
Policies—House
& Senate versions of IDEA
Groups across the US have bombarded
families with information about possible changes to the special education
law—IDEA. Most articles try to tell
families what to think (e.g. the changes are bad) and what to do (i.e.
it’s a crisis, write your Congressman). Families benefit when articles outline
what changes are proposed, how they may impact a child/family and encourage
families to think for themselves.
According to a schedule
published by Senate Majority Leader Bill Frist (R.TN), the Senate bill
reauthorizing IDEA (S.1248) will be considered by the full Senate in
March. Under a unanimous agreement, both
parties have agreed to offer four amendments.
The Republican amendments limits attorney fees for parents and reduces
the “paperwork burden” on teachers. The
Democrats’ amendments focuses on full funding and homeless children. Each side also has reserved an
"unspecified" amendment.
If the bill is passed by the Senate, it
will go to a conference committee made up of members of the House and Senate to
resolve the differences. Changes in the House and Senate versions that
may have some impact on kids in ND include:
1. Focus on preparing
students for further education:
Special education may be
redefined as “services deigned to meet children’s unique needs and prepare them for
employment, further education, independent living; Further education is
new language.
2. Requires special education teachers to be
skilled:
The law would require special education teachers to be highly certified
in teaching the elementary curriculum or pass a rigorous test or have an
academic major in the content area they teach at a middle or high school level.
3. More minority
teachers will be recruited
Because 1/3 persons in the US are a member of a minority group or have
limited English proficiency, greater attempts to recruit special ed. teachers
from minority groups will begin.
4. Special education may reach
more students
May include children ages
3-9 who have developmental delays in only 1 area (physical, cognitive,
communication, social or emotional or adaptive development); and who because of
the delay need special education.
5. Families may receive new
related services
The senate bill adds interpreting services, school
health services and travel training to related services.
6. Transition services may be
strengthened.
Transition services are newly defined as a results-oriented process, that
is focused on improving the academic and functional achievement of the child
with a disability to facilitate the child's movement from school to
post-school activities, including post-secondary education, vocational training,
integrated employment (including supported employment), continuing and adult
education, adult services, independent living, or community participation; See next months article for more details
Family Stories: Building a Circle of Support
You may have heard the phrase it takes
a village to raise a child. If this is true, it means that grandparents,
siblings, relatives, neighbors, friends, teachers, and community leaders all
play some part in helping young people grow up and take their place in the
circle of life.
When a young person has significant
physical and intellectual challenges, their world and that of their parents can
narrow to a never ending round of personal care, therapy, and health-care
visits.
Every family takes a slightly different
path in their attempts to widen their child’s horizons and create a supportive
routine (working, playing, learning and caring for one another) that lies at
the center of family life. Families try to take what is an atypical experience
and manage events so that the stress of coping with what is different or
difficult is relieved by experiences that are fun-filled, relaxing and
every-day.
One family, recently shared challenges they face in raising their son
Harkin, an 8 year old boy who has cerebral palsy, seizures and intellectual
disabilities. I asked Becky to comment on some of the issues and success they
had experienced in building a support network for their family.
Balance:
How do you keep from being overwhelmed by the challenges of meeting Harkin’s
day-to-day needs? For us, balance means support not only with the physical
challenge of lifting our son in and out of the tub or car but meeting the
mental challenge that goes along with constant problem solving and an unclear
future. We create balance by giving one another time, because we have often do
the work of parenting together. It takes both of us to provide some of our
son’s physical care (he has gotten so big); it is easy to get on one another’s
nerves. So we each take one night a week alone so that Todd can bowl with the
guys and I can play basketball or golf with the gals. We also try to get out as
a couple once a week. That is important, time together without parenting, just
being a man and woman.
Support:
What are some of the services available in your community that have helped you
meet Harkin’s needs? Well the respite care we get every month that allows us
to get out of town for an occasional weekend. It’s not a lot of hours, there
have been lots of cuts, but we feel we are getting as much as anyone. We get
tired of asking friends to take Harkin or waiting for them to ask. If we lived
closer to family we could maybe say, I need a break, you’ve got to take my kid.
Respite is essential. Sometimes we think about moving closer to family but our
jobs and all of our friends are here.
The
Community Learning Center has been great. At first they seemed a little
uncertain about taking Harkin after school but now he rides the bus and they have found the
extra staff to help him. This is one of his only opportunities to be with kids
who do not have disabilities and feel like one of the gang. That is really
important for Harkin and for us. The kids have lots of questions “Why doesn’t
he, why can’t he… why is he … and we welcome that.”
Family-to-family:
Have you sought out other families? Would it be helpful to meet other families
whose children face similar challenges? Well, sought out, no. I guess I
would never turn anyone away, I would talk with another family if they wanted
to visit but I guess I haven’t gone looking for that. Maybe because I work with
people who have disabilities and need to keep some balance or maybe because I
am afraid it would open up issues that I am not ready to face right now.
Every Day
Experiences: What are some of the every-day experiences that you have been able
to give Harkin or enjoy as a family that are important to you? Oh wow, there are so
many. Michelle Bliven organized an opportunity for kids with disabilities to
play T-ball last summer. She had so many volunteers helping that we got to just
sit in the stands and be parents and his grand parents could come and see him
play. We go camping with friends and ice-fishing and Harkin loves that. We golf
a lot, we even got him his own golf cart because otherwise we had to rent one
every week and that got expensive. It’s a lot of work to take him places but
it’s worth it. We go out to eat, it’s important for Harkin to know how to act
in a restaurant. And the people who provide respite care, it’s more like
they’ve adopted Harkin into their family, not just taking him for the evening.
He goes with them to the mall or to their children’s dances and that’s the way
we want it.
What are
some of the strategies every family
needs to have to learn to build a generic circle of support? Well we think it’s important to:
- Rely
on family and friends as much as you can
- Have
at least one friend who really knows your community—what is going on,
where to tap into different resources. They don’t need to have a child
with a disability—just be well connected.
- Keep
your ear to the ground yourself and look for new opportunities.
- Find
a good pediatrician. Our doctor spends a lot of time communicating with
specialists for us and that saves us long trips to other cities.
- Don’t
be afraid to try a disability clinic even if you already have doctors
working with your child. You can go to all or some of the stations and see
only the health care specialists that you need.
- Learn
to get on the phone and ask questions.
- Take
one day at a time. Give yourself the time to do that.
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
- IDEA is on the schedule to be reviewed by the Senate in March, 2004.
- ND Children up to 21 years of age are limited from co-pays under
Medicaid.
- Both the Senate and the
House of Representatives have passed bills to reauthorize the Workforce
Investment Act (WIA). The WIA
authorizes all federal job training programs including programs and
services for individuals with disabilities. The bills now goes to a
conference committee.
- The ND Collaborative
Conference—Building New Ties and Enhancing Family Support will be held
June 10-12th at the Doublewood in Fargo. Call 1-800-233-1737 for more
information.
- Basic Emergency Lifesaving
Skills in Schools provides training for teaching safety skills (CPR/First
Aid) to adolescents in schools. Training will be offered in ND this winter
at upcoming BELSS workshops.
Fargo, N.D. January 26 - 27, 2004 Holiday Inn
Rugby, N.D. April 5 - 6, 2004
COST: $50.00 per person or $40.00 per person for a team of three or more participants representing the same school district (Registrations must be sent together). Call Howard Walth at (701) 328-2953 for more information.
The
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,