Transcript Family Voices of North Dakota, Inc.

Parent Leadership
Creating Partnerships for North Dakota
Families
Sponsored by:
Family Voices of North Dakota Health Information
and Education Center
US Dept of Health & Human Services / Centers for
Medicare and Medicaid Services – Grant # 11-P92506/8-01 & Department of Human
Services/Medical Services Division /CSHS
On Your Way Here Today

You hoped you would
Today’s Goals
To provide helpful ideas and practice
tools to help you work collaboratively
with health care providers and payers
 To encourage good consumerism in the
health system
 To provide helpful ideas and practical
tools to help you coordinate your child’s
care

About Children and Youth with
Special Health Care Needs
Children with special health care needs are
those who have or are at increased risk for a
chronic physical, developmental,
behavioral, or emotional condition and who
also require health and related services of a
type or amount beyond that required by
children generally
Definition developed by Maternal and Child Health Bureau
July 1998
About Families
WE all come from families. Families are big, small,
extended, nuclear, multigenerational, one parent,
two parents and grandparents.
WE live under one roof or many. A family can be as
temporary as a few weeks as permanent as forever.
Families are dynamic and cultures within
themselves, with different values and unique ways
of realizing dreams.
Together or families become the rich source of our
cultural heritage and spiritual diversity.
Children With Special Health
Care Needs
Are above all children who want to live a
happy healthy childhood.
 Our children live in towns, cities and rural
areas.
 They go to school, church and enjoy
community activities.

Challenging Conditions


Some of our children
have a physical
disability, mental or
emotional disabilities
Others have a chronic
health illness
Our Children Cont.



Some may have a brief
but life threatening
medical problem
Others only need an
accurate diagnosis
Some may need
treatment,medicine or
life sustaining
technology
Health Care
Children with special health needs receive
their health care from a combination of
private and public financing and delivery
systems.
 Approx. 10 million children have a chronic
health condition.
 4 million have a condition that limits their
school and play activities.

Families Are the Core of Any
Health System
All families, including those who have
children with special health needs, are the
primary caregivers and educators for their
children.
 They should be respected and valued for
their expertise and commitment to their
children.

Universal Access
In order for this nation and it’s children to
be healthy, it must guarantee unconditional
access to quality primary and specialty
health care at a reasonable price
 Regardless of: family’s health, income,
employment, location pre-existing condition
or prior utilization of services

Flexibility

Whether public or private, a health care
system must provide effective, flexible
services that are guided by medical and
family needs, rather than by policies of
standard medical insurance practices or
government bureaucracies
Comprehensive, Coordinated,
Community Based Care
Quality health care means a coordinated
system of comprehensive services.
 Prevention, education, screening, diagnosis,
primary and specialty care, hospitalization,
medication and supplies, equipment, and
rehabilitation all available as close to the
family’s home as possible.

Family-Professional Partnership

Outcomes improve when families and
professionals make decisions jointly,
respecting the expertise, talents, and
resources that each brings to the care of the
child with special health needs.
Cost Effectiveness
By focusing on outcomes, allowing family
choice, and strengthening and supporting
the role of families in health systems, costs
can be reduced.
 The elimination of duplicative procedures,
unnecessary paperwork, and administrative
overhead also reduce costs.
 As families we practice cost containment
every day.

Quality Assurance

Working as partners and remembering these
principles, families and health professionals
must regularly review and provide feed
back on health care financing and delivery.
What Can We Do for You?

You can receive our
quarterly newsletter,
weekly e-newsletter,
sponsor workshops,
and much much more
Information and Referral

We offer individual
assistance and support
to families of children
with special health
needs
Information and Assistance


To medical
professionals, service
providers, community
groups, educators and
families.
Families can also
assist us in a variety of
ways. If interested, let
us know following this
workshop
Publications and Assistance
We have a wide variety of resource
information for families and professionals.
 Networking linkages: local, regional and
national links to assist in information needs.

How to Contact Family Voices of
North Dakota
You may reach us by phone at
701-493-2634 or toll free at 888-522-9654
 E-mail: [email protected]
 Web: http://www.geocities.com/ndfv/
Next Steps
Being an Advocate for your child.
What does it mean?
Next Steps
It means doing whatever is necessary to
assure your child gets what he or she
needs and what you need as a family to
support and care for your child.
When you have a child with special
health needs, families need to develop
skills and knowledge to become better
advocates for their children.
How to Be an Effective Advocate
Advocating means speaking on behalf of
something or someone
 Being an advocate for your child means
just that, which may take being assertive
 Assertiveness does not mean being angry,
offensive or aggressive

How to Be an Effective Advocate
Cont.
Assertiveness is not…
--Beating around the bush
--Feeling too guilty or afraid to express your
needs
--Agreeing with professionals no matter how
you feel – because professionals know best

How to Be an Effective Advocate
Assertiveness is…
--Expressing your needs clearly and directly
--Expressing your ideas without feeling guilty
or embarrassed
--Sticking up for what you think your child
needs –even when “experts” may not agree

How to Be an Effective Advocate
You can disagree without being
disagreeable--Be:
Calm
Well-informed
Prepared
Persistent

How to Be an Effective Advocate
Remember your goals
 Stick to one issue at a time
 Express your own feelings without blaming
others-use “I” messages, rather than “you”
messages

Keep in Mind
Professionals cannot solve all the problems
or answer all the questions, be realistic,
about what you can expect from the
professional working with your child
 Professionals and service providers are
human and like you, may be frustrated by
your child’s condition or the ability to
answer questions

Advocacy Tips





Prepare yourself with information. Ask questions.
Know your rights.
Keep records. Be organized.
Don’t go it alone. Seek out other families and
supportive people.
Advocate with confidence! You are the expert on
your child.
Trust your instincts: You may be right, even if
professionals disagree with you. However be
open to learning new things.
Finding Information and Support
 Other
families: Do you know other
families? Talk to them. Contact your
Family to Family Support Network 1888-434-7436
Finding Information and Support
 Phone
book: try to find government
programs and resources that serve your
community, usually at the end of your
phone book
Finding Information and Support
 Library:
can help you find out if
specific disease or disability
organizations have state or local
chapters. Look for magazines or
periodicals such as Exceptional Parent
www.eparent.com Libraries often
provide computers for accessing the
Internet to search for information
Finding Information and Support Cont.
 Hospitals,
clinics and health providersask about parent support groups and
resource centers.
Finding Information and Support Cont.
 Schools-for very young or preschool
children find out about early
intervention programs. For school age
children who may need special
education, learn what is available, how
to contact parent training and
information centers. Start by calling
the local school district or speak to
someone in special education services.
Support Cont.
Internet-some valuable web sites are
www.familyvoices.org
 www.familyvillage.wisc.edu
 www.nichcy.org
 Contact your Family Voices office in your
state. For North Dakota 888-522-9654,
They are they to help you find the
information you are searching for!!!

Keeping Records
Design a system that will best work for you.
Some parents use notebooks or a binder with
dividers.
Some use a system in drawer or box.
Whatever will make you more comfortable,
your records help you to know what is
happening.
List of information to gather and record
Medical Information~include you child’s
diagnosis, history, immunizations,
medications, surgical.
 Identify what to do in an emergency
situation and share this information with
your child’s sitter, teacher, emergency
medical systems and others.

Keeping records cont.
Hospital/clinic records and reports: Ask for
and keep every piece of paper about your
child by the hospital, clinic etc. It is your
right to have this information
 Personal notes and observation~take your
own notes each time you talk to your child’s
doctor, nurse or other providers. Record
milestones and achievements!

Keeping records cont
Insurance information~what does the plan
cover, how does the plan work. Keep
information that explains the plan
 Assistance programs~keep up with
information about helpful for which your
child is eligible
 School records~include report cards, IFSP,
IEP, any notes from school or your own
notes

Keeping records cont.
Child care/after school/summer
programs~are there guidelines or rules?
 Telephone contact notes~make notes of
phone calls you make or receive about your
child

Keeping records cont.
Correspondence~keep a copy of any time
you receive or write a letter to your child’s
doctor, teacher, insurance
 Expense and travel logs~keep up with this
information for tax and insurance
reimbursements
 Meetings and brochures~you never know
when a brochure or presentation handout
may come in handy

What’s a “Medical Home”?
What’s a Medical Home?

A medical home is not a building, house, or hospital, but
rather an approach to providing health care services in a
high-quality and cost-effective manner. Children and their
families who have a medical home receive the care that
they need from a pediatrician or other health care
professional. Pediatricians, families, and allied health care
professionals act as partners in a medical home to identify
and access all the medical and nonmedical services needed
to help children and their families achieve their maximum
potential.
Definition of Medical
Home
Care that is:
 Accessible
 Family-centered
 Comprehensive
 Continuous
 Coordinated
 Compassionate
 Culturally-competent
And for which the pediatrician:
 Shares responsibility
Benefits of a Medical Home
 Increased patient and family satisfaction
 Establishment of a forum for problem solving
 Improved coordination of care
 Enhanced efficiency for children and families
 Efficient use of limited resources
 Increased professional satisfaction
 Increased wellness resulting from comprehensive
care
Accessible
Philosophically

Efforts made to meet needs of all patients and families
Geographically

Care is provided in the child’s community
Financially

All insurance, including Medicaid, is accepted and changes
are accommodated
Family centered
Recognition that:

Family is the principal caregiver and the center of
strength and support for children

Parents are experts on their own children and are
a source of essential information

Unbiased and complete information is shared on
an ongoing basis
Continuous

Same primary health care professionals are
available from infancy through adolescence

Pediatrician assists with transitions
- Hospital to home
- Home to school
- School to job or independent living
- Primary to secondary to tertiary
medical care
Comprehensive

Preventive and primary care is provided

Pediatricians have a knowledge of the full range
of child health problems

Pediatricians are knowledgeable about resources
within the community

24-hour illness or emergency care is provided 7
days a week
Coordinated

Families are linked to appropriate support,
educational, and community-based services

Information from other service providers is
centralized

Pediatrician communicates effectively and
collaborates with all service providers on plan for
child’s care
Compassionate

Concern for well-being of child and family is
expressed and demonstrated

Families’ values, beliefs, and behaviors are
respected

Pediatrician actively listens to families and
validates families’ feelings
Culturally competent

Family’s cultural background is recognized,
valued, and respected

Multi-language materials and translation
services are made available as needed
Sharing responsibility

Pediatrician accepts responsibility for
services rendered

Pediatrician maximizes quality while
minimizing cost

Pediatrician ensures that all needed services
are delivered and avoids duplication
Medical Home Common
Elements
Care that
is:
and for which
the PCP:
Accessible
Family-centered
Comprehensive
Continuous
Coordinated
Compassionate
Culturally effective
Shares Responsibility
THE MEDICAL HOME CONCEPT
Medical
Specialists
Educational
Services (incl.
E.I.)
Religious/
Spiritual Support
Medical Home
Child/Family
Parent
Support
Services
Mental
Health
Services
Financial
Assistance
Child/Family includes
family support
resources
Pediatrician and
other medical
providers
School includes
early
intervention
Insurance
providers/financial
resources
CommunityBased Team
Social Services
includes mental health
Religious /spiritual
supports
Physicians’ and Parents’ Ranking of
Services from the American Academy of Pediatrics
Ranking
Service
Respite care
Day care
Parent support groups
Help with behavior problems
Financial information or help
After-school child care
Assistance with physical
household changes
Vocational counseling
Psychological services
Homemaker services
Recreational opportunities
Information about
community resources
Dental treatment
Summer camp
Your Ranking
Physicians’ and Parents’ Ranking of
Services from the American Academy of Pediatrics
Ranking
Service
Respite care
Day care
Parent support groups
Help with behavior problems
Financial information or help
After-school child care
Assistance with physical
household changes
Vocational counseling
Psychological services
Homemaker services
Recreational opportunities
Information about
community resources
Dental treatment
Summer camp
Physicians
1
2
3
4
5
6
Parents
9
21
3
10
2
20
7
8
9
10
13
15
6
5
22
4
14
16
19
1
8
7
Quality Health Care Systems & Practices
for CSHCN
The child has access to quality primary and
specialty health care
 The child has a medical home that includes
a consistent primary care provider who
delivers well child care and preventive care
based on guidelines of the Academy of
Pediatrics

Quality Health Care Systems & Practices
for CSHCN
 Primary
care provider is
knowledgeable about the child’s
special condition, specialists and
resources in the community
Quality Health Care Systems & Practices
for CSHCN
 Primary
care provider communicates
effectively with the family, specialists
and providers
 Obtaining referrals from the primary
provider to other providers is easy,
timely, involves minimal paperwork
and can be done on a standing basis
Quality Health Care Systems & Practices
for CSHCN
The child receives specialty care from a
pediatric specialty providers in appropriate
amounts
 When the primary care provider and the
family agree that it is important, a specialist
can act as the child’s primary care provider

Quality Health Care Systems & Practices
for CSHCN
 The
family has a role in choosing both
primary and specialty providers for the
child
Quality Health Care Systems & Practices
for CSHCN
The child has a written health plan that is
developed by both the family and
provider, which can include everything
the child is involved in such as school
activities, therapies, etc. The health
plan is regularly monitored and easily
changed
Quality Health Care Systems & Practices
for CSHCN
Together the provider and family is involved
in all aspects of the life of the child with
special health care needs
Quality Health Care Systems & Practices
for CSHCN

In a Medical Home physicians and parents
share responsibility for ensuring that
children and their families have access to all
the medical and non-medical services
needed to help them achieve their maximum
potential.
Colleagues
What exactly is a colleague
-Associate; Partner, collaborator
 You are a colleague in your own health care
and in the your child’s health care

The Health Care Team
The health care team may include,
physicians, nurses, pharmacists, therapists,
and always the parent and patient
 ALL the members of the team have
expertise and experience that is unique, but
has equal value

Collaboration
To work together, especially in a joint
intellectual effort
 Collaboration is the responsibility of
parents/patients and professionals

Principles of Collaboration
 Promotes
a relationship in which
family members and professionals
work together to ensure the best
services for the child and family
Principles of Collaboration
 Recognizes
and respects the
knowledge, skills and experience
that families and professionals bring
to the relationship
 Acknowledges
that the development
of trust is an integral part of a
collaborative relationship
Principles of Collaboration
Facilitates open communication so that
families and professionals feel free to
express themselves
Principles of Collaboration
 Creates
and atmosphere in which the
cultural traditions, values, and
diversity of families are
acknowledged and honored
Principles of Collaboration
Recognizes and negotiation is essential in
a collaborative relationship and
 Brings to the relationship the mutual
commitment of families, professionals,
and communities to meet the needs of
children with special health needs and
their families

You Have a Right to Expect Certain
Things When Seeking Health Care
Respect for you and your child
 Willingness to listen patiently
 Taking your concerns seriously
 Courtesy from office staff

What Is Quality Care
 You
need to answer that question for
yourself and your child. For some
families it is:
--Family Centered Care
Family Centered Care……What is it?
Family centered care is an approach to
planning and implementing services and
service systems that focuses on the family
and is driven by the values, preferences,
priorities, and needs of the family.
Key Elements of Family-Centered Care
Incorporating
into policy and practice
the recognition that the family is the
constant in a child’s life, while the
service systems and support system
within those systems may fluctuate
Key Elements of Family-Centered Care
Facilitating
family/professional
collaboration at all levels of hospital,
home and community care ex: care of
an individual child, program
development, implementation,
evaluation, and evolution and policy
formation
Key elements cont.
Exchanging complete and unbiased
information between families and
professionals in a supportive manner at all
times
 Incorporating into policy and practice the
recognition and honoring of cultural
diversity, strengths, and individuality within
and across families, including ethnic, racial,
spiritual, social, economic, educational, and
geographic diversity

Elements Cont…..
Recognizing and respecting different
methods of coping and implementing
comprehensive policies and programs that
provide developmental, educational,
emotional, environmental, and financial
supports to meet the diverse needs of
families
 Encouraging and facilitating family to
family support and networking

Elements Cont.
Ensuring that hospital, home and
community service and support systems are
flexible, accessible, and comprehensive in
responding to the diverse needs of families.
 Appreciating families as families and
children as children, recognizing that they
posses a wide range of strengths, concerns,
emotions, and aspirations beyond their need
for specialized health and developmental
services and supports.

Partnerships with Professionals
The key to family centered care is the
relationship between families and
professionals. A mutually respectful and
collaborative partnership promotes good
communication, goal setting, and problem
solving.
When these relationships work well, everyone
benefits, especially the child.
Guiding Principles
Family/professional collaboration:
Promotes a relationship in which
family members and professionals
work together to ensure the most
appropriate services for the child and
family
Guiding Principles
 Recognizes
and respects the knowledge,
skills and experience that families and
professionals bring to the table
 Facilitates open communication so that
families and professionals feel free to
express themselves
Guiding Principles
 Creates
an atmosphere in which the cultural
traditions, values, and diversity of families
are acknowledge and honored.
 Recognizes that negotiation is essential in a
collaborative relationship and.
 Brings to the relationship the mutual
commitment of families and professionals
and communities to meet the needs of
children with special health needs and their
families.
Guiding Principles
Collaborative partnerships often take time and
a lot of effort to achieve.
Knowing how to interact with professionals
can be critical to your success in advocating
for your child.
What Is Quality Care
--Working with people who listen and explain
things clearly to you and your child
--Sharing complete information in a timely
manner
--The parent being viewed as an equal member of
the health care team, with valuable information
to share about the child that no one else on the
team has
Prepare for Medical Visits
Your time and your child’s service provider
time is valuable
 Help your child prepare for the visit by
telling him/her what to expect
 Ask questions

Good Communication Is
Essential
Be ready to discuss your child’s condition
with facts and if possible documentation
 Write down in a notebook your observations
of behavior, illness, temperatures, eating
habits or anything else that your service
provider may need to know regarding your
child’s health or diagnosis

Good Communication Is
Essential
Write down questions you have or things
you want to discuss. Do not hesitate to ask
questions and do not be embarrassed to ask
for clarification when you don’t understand
 If there isn’t enough time during the
appointment to get all of your questions
answered, ask if you can have another
appointment, or if the service provider can
call you at another time

Good Communication Is
Essential

Work at understanding – listen and take
notes, you cannot control how well
another person will listen, but you can
make sure you are doing your part
With the service provider develop a plan--Write down the plan

Good Communication Is
Essential
--Decide who will do what in the plan
--Set time limits
--Send a copy of the plan to the service
provider
--Follow up on the plan
Good Communication Is
Essential

If the relationship between you and your
child’s provider is not working out, and you
have tried everything to make it
work…..You can also consider changing
providers.
Some Things to Consider:
If changing providers is something you
consider
Ask yourself these questions:

--What are the options with your health plan?
--Is the provider a specialist or a generalist
Things to Consider;
--You can interview new providers.
 Interview in person or on the phone.
 Ask clinic staff about clinic
procedure/hours etc.
 Talk with your provider about:
Things to Consider;
-What you are looking for in a provider.
--What you want your role to be in the
health team.
--How will decisions be made.
--Access to your child’s medical record.
Be All That You Can Be
Empower yourself with knowledge
You and your child have some rights and it ‘s
part of your job to watch for them
Get training go to workshops
Read newsletters and other materials
Participate on advisory committees
ASK for help from other parents and
professionals

Disclaimer
The following information is here to guide
you
 Only you can make the decisions for your
child

Things to Remember

Health law is COMPLEX

No single law will cover everything

It’s a quilt of federal and state laws
Choosing a Health Plan
Preparing for the health needs of your child
begins at birth.
 Important things to consider when choosing
a pediatrician or primary care provider is
knowing which health plan contracts with
what provider.
 Access to specialists, (PT), (OT), speech
etc. can be critical.

When Choosing a Plan
Get information about health plans
available.
 Find out if your child’s current provider
participates in this plan.

When Choosing a Plan
 Learn
whether medications your child
uses are included in the plan’s
formulary list of covered medications.
Make sure to know if brand names or
generic names are covered by the plan.
When Choosing a Plan
 Ask
about access and any limitations to
specific services like PT, OT, speech,
dental, vision, home health, mental
health, durable medical equipment,
nutrition, case management, diagnostic
testing, genetic services or services like
transportation.
When choosing a plan
 Find
out procedures to follow up
for getting urgent emergency care
when traveling
 What procedures are in place for
handling complaints and filing
grievances and appeals. What are
your rights?
When choosing a plan
 Find
out about voluntary and
involuntary disenrollement from
the plan. How and when do you
get a chance to change plans if
necessary?
Finding the right Pediatrician or Primary
Care Physician (PCP)
Having a good relationship with your
child’s pediatrician or PCP is especially
important
 Find someone who values your expertise
about your child and accepts you as a
competent, knowledgeable partner on the
health care team
 Good communication is essential

Some questions to ask
 In
what health insurance plan do you
participate?
 How much experience do you have in
working with cshcn and their families?
Are you willing to learn about my
child with special health needs?
Some questions to ask
 Who
sees your patients when you are
not available?
 Are you comfortable making referrals
to other health professionals and being
a part of a medical team in partnership
with me?
Questions cont.
To which hospitals do you refer patients? Is
one of them a children’s hospital?
 Can you schedule extra time for
appointments, if needed? Do you have
flexible office hours that includes weekends
and evenings?

Questions cont.
How easy or difficult is it to reach you by
phone? What is the best time to call, if I
want to discuss something about my child?
 Will you “go to bat” for my child, if the
health plan does not readily approve needed
health services?
Include your child as appropriate, in
discussions about choosing a doctor and
planning for health care

Identify
A.
Understand your benefit plan
B.
Understand health plan concepts/some
plans now are under managed care. What
is your policy?
Get, review and keep copies of your
child’s medical records
C.
Understanding Your Plan
Your evidence of coverage is the document
that explains what your benefits are AND
what your obligations are under the plan. It
is a CONTRACT
Every health benefit plan is DIFFERENT

Understand Your Plan
It’s long BUT read through it
 Look up sections you KNOW you will need
 Check what is COVERED
 Check what is not covered (EXCLUSIONS)
 How much do you have to PAY?

Health Insurance Plans
A commercial health plan is a private health
insurance plan obtained as a group policy or
purchased as an individual health insurance
contract.
Except for costs that are covered by one
employer a person with private insurance
coverage may pay premiums, deductibles
and co-payments on herself/himself or for
family dependent coverage.
Health Insurance Plans
Group plans generally cost less for consumers
and families than individual insurance.
Most states do not require employers to
provide health coverage to their workers.
Fee for service or indemnity insurance used to
be the most common type of health
insurance policy.
Health Insurance Plans
These health plans reimburse physicians and
hospitals for individual service provided.
Plan enrollees can choose any hospital or
physician for services.
This type of plan is criticized for giving
hospitals and physicians incentives to “over
treat” patients since the provider can gain
financially for each service.
The alternative to fee for service is some form
of managed care plan.
Managed Care Plans
Managed care refers to a health plan that
incorporates the delivery of health services
with the financing of those services
Managed care organizations (MCOs) contract
with providers to supply health care
services and encourage enrollees to obtain
with a plan’s network
Managed Care Plans
Type’s of managed care plans
HMO (Health Maintenance Organization)
PPO (Preferred Provider Organization)
POS (Point of Service).
Managed Care Plans
Health Maintenance Organization-type of plan
that provides or arranges for coverage of
defined health services needed by plan
members for a prepaid premium.
Covered services are usually paid for in full
by that premium or require a small fixed fee
for service or co-payment for office visits
etc.
Enrollees must use providers in the HMO
network or the service may not be covered.
Managed Care Plans
Examples of networks in ND may be: Altru,
Meritcare, MedCenter One, Northland
Healthcare, Dakota, Innovis.
Preferred Provider Organization (PPO)-a PPO
is managed care in which providers in a
plan’s network receive payments in
discounted-fee arrangements and agree to
provide discounted rates.
Managed Care Plans
Enrollees are given financial incentives
(usually lower deductibles and coinsurance) to obtain care through
participating providers.
Enrollees can seek care through nonparticipating providers, but may also pay a
higher co-payment.
Managed Care Plans
Point of Service Plan (POS)-sometimes called
open-ended HMO’s permit enrollees to
decide at time of service whether to obtain
services through a covered network or out
of network provider.
Your Benefit Plan
Do you have better coverage for “network
providers”?
 Do you have to get REFERRALS to see
specialists?
 Do you have to receive “prior
authorization”?
 What do you have to do to APPEAL a
decision?

Your Benefit Plan
Is your plan SELF-INSURED?
--This means: does your employer pay claims
itself or does the managed care plan insurer
pay?


(You may have to ask to find out the answer)
--If it is self-insured then state law many
not apply. Look to federal law (ERISA)
for rights
Benefit Plan/managed Care
Concepts

Provider networks
--Probably better coverage for seeing
PARTICIPATING PROVIDERS then for seeing
NON-PARTICPATING PROVIDERS
--Check ASAP to find out if your doctor pharmacy
hospital is a participating provider
Benefit Plan/Managed Care
Concepts

Referral Requirements
--Get permission from the doctor BEFORE
seeing a specialist
--Recommendation: Create a relationship
with a primary care physician
Benefit Plan/Managed Care
Concepts

Prior Authorization

Get Permission from the plan BEFORE
you get the service or else you may have
to pay for it all yourself!
Benefit Plan/Managed Care
Concepts

There are STATE LAWS about what
your managed care plan insurer has to do

You will probably see the words
“MEDICALLY NECESSARY” quite
often
Benefit Plan/Managed Care
Concepts

Prior Authorization
--DISCLOSURE-they must tell you what the
process is
--Help-your physician can help you
--PATIENT INFORMATION-They shouldn’t
need all of the medical records
Managed Care Concepts
Two types of review:
1.
Standard review-has a 10 day time frame
2.
Expedited review-has a 72 hour time frame
Appeals-there are rules for prior authorization
appeals
Concepts Cont.
1.
2.
3.
4.
Prior authorization appeals
They must tell you what the process is
They must meet time requirements
You and your physicians must have access
to the reviewers
You have the right to an external appeal
Understanding Concepts
Appeal procedures-claim denials, and other
complaints
1. They have to have one
2. You have to have a written copy of the
procedure
Understanding Concepts
1.
2.
3.
You start the process by appealing IN
WRITING
Begins with an INFORMAL REVIEW
and an INITIAL DECISION
You can APPEAL the initial decision
Example Story

Story 1: Tyler has autism, his physician
recommends he receive physical therapy at
the nearby hospital. Tyler’s parents
contacted their insurer and were told the
services won’t be covered, because they are
not part of the benefit package
Stories Cont.
What can the parents do?
1.
APPEAL-The services may really be covered
under the plan
2.
Share and Discuss- To whoever chose the
benefit package. This may be…
The employer-If OK with privacy issues
Government-If it is a government plan
Susan’s parents- If they chose the benefit plan
themselves: (This means check what is in the
package before you buy)
Stories Cont.

Story 2: Tyler has a rare genetic disorder,
his physician has recommended he receive
physical therapy service at the nearby
hospital. Tyler’s parents contacted their
insurer and were told the services won’t be
covered because they are not medically
necessary.
Stories Cont.
What can the parents do?
--APPEAL- Show the services really are
“medically necessary”
--Share and DiscussTell the employer what has happened (if OK
with privacy issues)
File a complaint with the Insurance
Commissioner

Medical Records
You can receive them if you request them
-it’s the law
Why do you want them?
1. Having complete information about
diagnosis and complications on hand

2.
Communication between you and the
providers (primary care, specialists, ER
Medical Records Cont.
3.
4.
5.
6.
To make sure they are complete and
accurate
You may need them if there is a dispute
with the insurer
You may need them to apply for a public
program
You may want to find out what
information is being released when you
sign consent forms
Medical Records

How do you get medical records?

Depends on state law
Ask for an authorization form from your
provider
Write a letter requesting to have a copy of
your medical records
a.
b.
Care Notebook
Adapted from Children’s Hospital in
Washington

Useful for all information relating to your
child
Patient Rights

Informed Consent/Informed Permission

Patients Bill of Rights/developed in 1999
ND legislative session

Rights set our in benefit plan
Patients Rights
Informed Consent/Informed permission
What does that mean for you?
The Right to Know
The Right to Consent
The Right to Refuse

Patients Rights
Patients Bill of Rights
--No federal law yet, still being worked on in
Congress

Teaching your child to be a self advocate
Sometimes self advocacy is referred to as Self
Determination.
As our children mature, we naturally want
them to become as responsible and
independent as possible.
Even young children can often become active
participants and learn about their health
condition, chronic illness and disability.
Teaching your child to be a self advocate
Self advocacy is a normal transition from
childhood to adulthood and benefits
the entire family.
Young self advocates learn and practice
important skills that will help them in
many areas throughout their lives.
Teaching your child to be a self advocate
They gain self confidence, feel better
about themselves, and feel more in
control of their illness and disability.
The biggest challenge for families is
knowing when and how to move to
more of a supportive role that promotes
self advocacy.
Hopes And Dreams Of All Youth In
Transition: Raising Expectations
Being valued as a human being and treated
with dignity
 Inclusive opportunities for social
experiences, dating, community
involvement, recreation, and worship
 Education and/or job training
 Increased freedom and independence
 Meaningful work for reasonable pay

Transition Begins In Childhood







Career planning begins in utero
Focus on health promotion and normal growth and
development
Prevent secondary disabilities
Promote self-care and independence
Promote socialization and peer activities
Encourage early volunteer and later work experiences
Refer to developmentally supportive services early
intervention, early start, special education or Section 504
Prepare For The Coming Of
Adolescence And “Letting Go”
Transition is more than a process. It takes all of us to make the
journey as smooth as possible.
Medical Provider
 Facilitating the process by setting the example at different
developmental stages
Family
 Changing care decision-making role to promote independence
and self-determination as developmentally appropriate.
Child/Youth
 Assuming roles and responsibilities for preparing for a
healthy/productive adulthood.
Prepare For The Coming Of
Adolescence And “Letting Go”
(Cont.)





Talk with the child/youth as well as their family. Think about
the future in 5 year segments.
Teach and re-teach about the health condition based on
changing cognitive development.
Ask the opinion of your young patients…get their ideas…
involve in decision making (assent to consent)
Ask children and pre-teens what they plan to do when they
"grow up" and support their plan.
Ask how they can help their families and communities make
their dreams become reality.
Medical Health Transition:
Support During Adolescence
Focus on typical adolescent issues first
 Encourage health promotion and injury
prevention activities
 Regularly do an adolescent risk assessment

Address Common Concerns Of
Adolescence
Am I like my friends?
 Do I fit in?
 Am I attractive?
 Can I be sexy?
 How Can I be safe?

Communicate Effectively With Adolescents
Means Talking and LISTENING






Be confident and act comfortable
Begin with open-ended questions and follow with
explicit questions
Move from less sensitive to more sensitive question
Pay attention to inconsistencies (yours and theirs)
Show that you care (validate their feelings)
Be available. How can they reach you when they have
a question? (ie, Phone or e-mail)
Adult Health Care Realities




Providers may have less experience with “congenital”
conditions
Adult health care may be less interdisciplinary and
more fragmented
Overall there seem to be fewer resources for adults
than children
Adult health care providers have higher expectations
for learning, personal choice, self-care, and
independent follow up.
Prepare Youth To:






Become more informed of their health issues and
proactive ways to maintain and sustain wellness.
Take charge and be responsible for their own health
Handle more choices with less direction
Become their own advocate
Become their own care coordinator
Find and use resources
Prepare for the Realities of
Health Care Funding
This age group is more vulnerable due to age, life
opportunities and complex needs
 Aging out of health care plans and services (private
insurance, EPSTD, state Title V)
 Temporary jobs often do not include insurance or premiums
are too high compared to the starting pay
 Desire to work and be independent may jeopardize dependent
status to remain on health plan.
 Increased salary may affect SSI payments (lower or eliminate
which then may cause to lose Medicaid)
Insurance Options: Private Insurance
Criteria for Maintaining:
Birthday rule
 Age cap
 Permanent dependent status

Private Insurance Strategies

COBRA (Consolidate Omnibus Budget
Reconciliation Act of 1986)
– Continues health plan after employment is
terminated.

HIPPA (Health Insurance Portability and
Accountability Act of 1996)
– Allows eligibility coverage to be portable from
a previous plan to a new plan
Private Insurance Savvy







Review member explanation of benefits packages carefully
Evaluate benefits
Ask office billing clerks which plans cover needed services.
Ask other families about covered services and out-of-pocket
expenses.
Provide adequate documentation to justify specialized
services and customized DMEs. More than a script is needed
these days. Brief descriptions, test results, preventative cost
savings and pictures are helpful.
Understand appeals process and assist family in providing
additional documentation.
Key test- The Benefit Inquiry
How to Stay Funded after Age
18?

Medicaid through SSI
– must be re-determined at age 18
– 30% lose benefits
Medicaid through special home and
community-based waivers
 Medicare with SSDI from parents or own
work experience

Special Help for Youth in
Transition

SSI Work Incentives
–
–
–
–
–

1619A – working, decreases SSI benefits, maintain Medicaid
1619B – working, loss of SSI Benefits, maintain Medicaid
Section 4733 of BBA- buy-in Medicaid
IWRE (Individual Work Related Expenses)
PASS (Plan for Achieving Self-Support)
Ticket to Work /Work Incentives Improvement Act
(TWWIIA)
Buy-in Medicaid for Adults
– If working and lose SSI
– Can buy Medicaid
Transition to Adult Health
Care Funding & Coordination

More than a referral
Requires:
– Coordination of care
– Referral to adult services
– Skill and determination to sort out funding
issues
– A focus on continuum of quality care
School to Work:
Support During Adolescence
Work skills start with having
responsibilities/tasks in the family
 Consistent attendance at school which will
later lead to a pattern of consistent
attendance on the job.
 Volunteer opportunities in the community

School to Work:
Support During Adolescence (Cont’d)
Identifying a passion and skills for future
job
 Finding a mentor to guide the way
 Getting the first job and taking the leap to
get the next job
 Key - Stay well to be part of the action

Steps to Independence








Personal Identification: License or State ID
Transportation: Scheduling or driving
Residence: Solo or coordinating/paying for
support
Personal attendant services; hiring, funding, firing
Recreation and Leisure
Companionship
Financial Management and Supports
Legal Issues (assent to consent)
Transition Laws, Safeguards,
and Opportunities
ADA
 IDEA for special education
 Section 504 of the Rehabilitation Act for
students in regular education/inclusive
settings
 Vocational Rehabilitation Services

IEP (IDEA) versus 504 Plan
(ADA)


Transition Plan in IEP by age 14; Services by age 16
(Making the most by being ready before age 14)
Section 504: Civil Rights for People with Disabilities
Bill that ensures access to same programs and
services available to students who do not have
disabilities (e.g., physical access, modification for
testing or due to health condition.)
Vocational Rehabilitation





Meet eligibility criteria: disability, order of
selection
Need support to prepare or pursue employment
SSI childhood recipients are referred by SSA to
VR at age 16
VR counselors in larger high schools
Seasons for asking for financial support (fiscal
Year and spend down times)
Issues in Transition to PostSecondary Education






Disabled Student Services
Student Rights and Responsibilities
Meets qualifications for disability based on ADA
definition
Must request reasonable accommodation
504 and the ADA ensure ACCESS; not SUCCESS
Student must know rights and responsibilities for
themselves and for the institution
Post-Secondary Education
Issues




Selection of school: Career training with support
services and scholarships.
Medical supports needed at school, nearby
campus, and plans for emergency and inpatient
events.
Insurance Coverage (one plan or a patch of plans)
Modifications: Work Load Medical Care, and
Proactive Wellness
Self-determination Founded on
Four Principles:
Freedom
 Authority
 Support
 Responsibility

Self Determination: The Roles
Individuals with disabilities
 Trusted others
 Independent brokers

Teaching your child to be a self advocate
Where can you find assistance?
KASA
Kids As Self-Advocates
Family Voices program that promotes selfadvocacy through peer empowerment and
development of leadership opportunities
www.familyvoices.org/kasa.html
Policy and Systems Advocacy
Where to Begin……..
What is systems advocacy?
Systems advocacy means improving the
services and systems of care for children
with special health care needs (and
families).
Sometimes individual advocacy for your child
is not enough. When programs and policies
that guide them do not support the family
centered care philosophy, you might be
challenged or inspired to make things work
better.
Agents of Change
We become agents of change, using our
family experience and skills to changes
systems so they become more family
friendly, responsive, flexible,
comprehensive, coordinated, communitybased, and culturally competent.
Public Systems for Children
A public system is one that is created through
legislation, paid for by our tax dollars, and
administered through federal or state
agencies.
Federally authorized service systems that
assist children with special health needs
Title V CSHCN Programs-refers to the Title
“Five” of the Social Security Act (SSA),
Children with Special Health Care Needs
Programs-ND program called CSHS
 Medicaid-refers to Title XIX “Nineteen” of
the SSA

Federally authorized service systems that
assist children with special health needs
SSI for Children-Supplemental Security
Income-Disable Children’s Program; Title
XVI “Sixteen” of the SSA
 CHIP/SCHIP—State Children’s Health
Insurance Program- Title XXI “Twenty
One” of the SSA

Federally authorized service systems that
assist children with special health needs
In North Dakota SCHIP is called “Healthy
Steps”
 IDEA—Individuals with Disabilities
Education Act Part C describes Early
Intervention programs for children birth-3
Part B describes Special Education services
for children 3-21
Title V CSHCN Programs
This program provides the basis for public
health and welfare programs across the
nation
Income guidelines apply
CSHS programs in ND are administered by
the Medical Services Division of the
Department of Human Services
There are three purposes for state cschn
programs
Title V CSHCN Programs
o
o
To provide and promote family-centered,
community based, coordinated care for
children with special health care needs
To facilitate the development of community
based systems of services for children with
special health care needs
Title V CSHCN Programs
o
o
To provide rehabilitation services for blind
and disabled individuals under the age of
sixteen receiving benefits under SSI, to the
extent medical assistance for such services
is not provided under Medicaid
Application is made at local county social
service office
Medicaid
Medicaid is the federal health insurance
program for low income children and
adults.
It is financed through federal and state funds.
Medicaid
Income eligibility guidelines apply.
Application is made at the local county social
service office.
EPSDT~Health Tracks program for children
enrolled in Medicaid.
Medicaid
Children under 21 have a legal guarantee to
screening, diagnosis, and treatment under
EPSDT. Free EPSDT services include
immunizations, screenings for health
problems, hearing screens, vision and dental
screens and any treatment that is medically
necessary to correct any physical or mental
illness discovered under a screen.
Children’s SSI Program
Is administered by the Social Security
Administration.
Through the SSI Program, parents or
guardians of low income children with
specific disabilities or chronic illness
receive monthly cash benefits.
Children’s SSI Program
Enrolling a child can be difficult and timeconsuming. Separate steps are required to
determine financial and disability eligibility.
Application is made through your local SSA office
but other agencies may be helpful.
In 1996 when the Welfare Reform Act was passed
the law changed which says that a child’s
impairment or combination of impairments—will
be considered disabling if it causes “marked and
severe functional limitations.”
CHIP




Created in 1997 to create funds to states to enable
them to initiate and expand the provision of child
health assistance to uninsured, low income
children
States were allowed to expand their Medicaid
program or expand a separate health insurance
program
ND Healthy Steps is not an expansion of
Medicaid, it is a stand alone insurance
Administered from the Department of Human
Services, Medical Services Division
IDEA
The Individuals with Disabilities Education
Act is the federal law that guarantees a Free
Appropriate Education in the least
restrictive environment for children with
disabilities
A qualifying child 0-3 an IFSP(Individual
Family Service Plan) may be developed
IDEA
3-21 an IEP (Individual Education Plan) may
be developed
Especially important for children with special
health care needs is the provision in the law
that schools must provide related services in
order for a child to benefit from education
IDEA
These may include PT, OT, speech and the
provision of health related services (like
catheterization, suctioning), except for
services that require a physician
Other guarantees in the IDEA include
assessment procedures to determine a
student’s abilities as well as educational
requirements and due process and complaint
procedures to ensure a students rights
Other Important Federal Laws
ADA-Americans with Disabilities Act 1990,
prohibits discrimination on the basis of
disability in employment, state and local
government, public accommodations,
commercial facilities, transportation and
telecommunications
Other Important Federal Laws
COBRA-(Consolidated Omnibus Budget
Reconciliation Act of 1985, requires employers
(with more than 20 employees) to offer employees
the option of continuing group health insurance
coverage (at the former employees expense) for 18
months or up to 36 months in some cases when
employment is terminated
DD Act (Developmental Disabilities Act and Bill of
Rights)
Other Important Federal Laws
The DD Act establishes the federal
Administration on Developmental
Disabilities which oversees three principal
programs
Protection and Advocacy-legal services in
each state
Developmental Disabilities Planning Council
Other Important Federal Laws
University Affiliated Programs-(training and
research) In North Dakota located at Minot
State University/North Dakota Center for
Persons with Disabilities
Other Important Federal Laws
ERISA-Employee Retirement Income
Security Act of 1974 enabled businesses to
develop self-funded health insurance plans
that are exempt from regulation by state
health insurance commissions and state
regulations. These plans can place limits on
benefits packages with little recourse for
enrollees
Other Important Federal Laws
FMLA-(Family Medical Leave Act of 1993),
requires mid-size and large businesses of 50
or more employees to allow workers to take
unpaid leaves of absences to attend to the
health needs of family members
Other Important Federal Laws
HIPAA-(Health Insurance Portability and
Accountability Act of 1996), this law offers
protection to people who have coverage through
employers or unions, including workers through
self-insured plans. This law makes it possible for
these people to get coverage even when they or
their family have past or present medical
conditions. It helps people maintain the coverage
they need when they change insurance or jobs.
--This law is undergoing some changes, and it is not
clear yet how these changes will affect consumers.
Other Important Federal Laws
HIPAA-- also makes insurance more
accessible for employees in small
businesses.
Other Important Federal Laws
Rehab Act-(Rehabilitation Act of 1973) makes
funding available for states to establish
programs to increase the independence and
employment of people with disabilities.
Sections of the Act prohibit discrimination on
the basis of disability in programs receiving
Federal dollars, in federal employment etc.
Other Important Federal Laws
Section 504 of the Act covers public schools,
most colleges and other programs in the
community.
Programs in the state who are covered under
the Rehab Act are Vocational Rehabilitation
(in ND there are 8 regional offices and tribal
offices and Independent Living Centers of
which North Dakota has 4. Bismarck,
Fargo, GF, and Minot.
Other Important Federal Laws
Tech Act ( The Technology Related Assistance
for Individuals with Disabilities Act of
1988).
The Tech Act makes grants available to states
to develop programs that support and use
assistive technology devises by people with
disabilities. Administered through the
Department of Education.
North Dakota’s Program is called IPAT.
Partners and Allies
Partners and organizations who share
your concerns about children with
special health care needs…
Providers-pediatrician or other health
providers, Academy of Pediatrics,
Nurses Associations, etc.
Partners and Allies
Children’s hospitals-.
Family based organizations-The ARC,
Federation of Families, ND Family to
Family, Family Voices, Parent Training
and Information Centers (Pathfinders).
Partners and Allies
Disease and Prevention Organizations-like
March of Dimes.
Public interest law firms-Legal Aid,
Protection and Advocacy.
Partners and Allies
Consumer health or child advocacy groupsChildren’s Caucus, Disabilities Advocacy
Consortium.
Elder/Senior Citizen- like AARP also
sometimes assist in children’s health issues.
Partners and Allies
There are many ways to get involved in small
or larger ways to assist all children with
special health needs.
Partners and Allies
--Board of Directors
--Committees and Task Forces
--Council’s
--Commission’s
Partners and Allies
One important thing to remember is you need
to discern if you are up to the task. On your
shoulders rests a large responsibility that
can color how agencies and professionals
view all families
Remember-none of us have to do it alone, WE
ARE ALL IN THIS TOGETHER….Each of
us can make a difference not only in the life
of our own children but the lives of other
families