Transcript Leave No Child With Special Needs Behind

Leave No Child With
Special Needs Behind
Sponsored by:
US Dept of Health & Human Services / Centers for Medicare and
Medicaid Services – Grant # 11-P-92506/8-01 & Department of Human
Services/Medical Services Division /CSHS
Family Voices of North Dakota Health Information and Education
Center
Today
• Federal and State issues of children with special
health needs
• Parent/Professional Collaboration
• Moving Forward
What Does Family Voices Do?
• Family Voices is a national grassroots
clearinghouse for information and education
concerning the health care of our children with
special health needs.
• FVND is a statewide Health Information and
Education Center
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
Health Care
• Approx. 14 million children have a chronic
health condition. Approx. 19,000 ND children
• 4 million have a condition that limits their
school and play activities.
Family Voices 2003
Introduction
Children with Special
Health Care Needs:
 Impacted by the most
systems
 Impact the whole family
 May have insurance or
funding streams
 Need to understand all
the systems available
Health Payer Systems
 Health Insurance
 CHIP/Healthy Steps
 Medicaid – EPSDT
 Children’s Special Health Services
 SSI
Systems
Every system has….
– Eligibility Requirements
– Processes & Procedures for Obtaining
Services
– Language, Terms & Definitions
– Appeals Processes
Identified Problem
• Some requirements vary from county to county,
region to region
• Families often don’t know or understand the
systems and how to navigate within programs
• Becomes even more difficult for children with
dual diagnosis or utilizing multiple systems
What We Know…
 We ALL want what is best for kids!
 Accessing health systems is very
confusing.
 Families may get very frustrated!
 Systems don’t make access for families
easy.
 A families ability to advocate the
child’s best interest fluctuates
dependent upon circumstances
Umbrella of Services
Health Systems
Developmental
Disabilities
School Services
Vocational
Rehabilitation
Dept. of Social
Services
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
Developmental Disabilities
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Early Intervention (0-3 years of age)
Family Support
Respite
Adult Services
Much more…call and ask!
Identified Problem
• Early Intervention Services 0-3
• At 2.5 years of age, child goes through
redetermination process
• Must be deemed eligible under the adult criteria
for DD services, in order to continue
• Often children are not eligible under this
determination and hence will lose valuable
services such as Medicaid
Federal Definition
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Federal Definition of Developmental Disabilities
According to the Developmental Disabilities Act, section 102(8), "the term 'developmental disability' means a
severe, chronic disability of an individual 5 years of age or older that:
(1) Is attributable to a mental or physical impairment or combination of mental and physical impairments;
(2) Is manifested before the individual attains age 22;
(3) Is likely to continue indefinitely;
(4) Results in substantial functional limitations in three or more of the following areas of major life activity;
(I) Self-care;
(ii) Receptive and expressive language;
(iii) Learning;
(iv) Mobility;
(v) Self-direction;
(vi) Capacity for independent living; and
(vii) Economic self-sufficiency.
(5) Reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic
services, supports, or other assistance that is of lifelong or extended duration and is individually planned and
coordinated, except that such term, when applied to infants and young children means individuals from birth to
age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a
high probability of resulting in developmental disabilities if services are not provided."
School Services
 Schools
 IDEA-federal law ensuring
FAPE (Free and
Appropriate Public
Education)
 IFSP (0-3)
 Part C within IDEA
 IEP (3-up to 21)
 504
Ask for it in writing.
You can call an IEP anytime!
Identified Problem
• Many families do not know their rights under IDEA,
especially true after re-authorization
• No Child Left Behind has added another layer of
difficulty for children with special health care needs
• Many families and professionals do not understand
Section 504
• Understanding of transition is difficult, including VR
services
• Federal proposals for decrease in VR funding
Children’s Health Insurance
Program (CHIP)
• Created in 1997 to create funds to
states to allow 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.
CHIP
• ND Healthy Steps is not an expansion of
Medicaid as in many states, it is a stand
alone insurance
• Administered from the Department of
Human Services, Medical Services Division
CHIP Continued…
• Children ages 0 through 18
• If a child is not living
with their parents, only the
child’s income is used to
determine eligibility.
• Eligibility is determined through
Adjusted Monthly Income Limits.
Identified Problem
• SCHIP, although comprehensive for CYSHCN
does not cover as well as Medicaid
• Federally, funding for this program can easily
disappear
• Eligibility is 140% FPL, leaving little difference
between 133% of Medicaid eligibility
• Still gaps
Children’s Social Security Income (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.”
S.S.I. continued…
• Disability is based on the child’s development
in comparison to children of similar age.
• If the expected duration of the disability is
12 months or longer.
• Impact of the disability on the future
development of the child.
• Parent’s income/assets are considered in the
eligibility. Exception: Child has been in a
medical facility for a full calendar month.
Identified Problem
• While many children with special health care
needs are deemed MEDICALLY eligible for SSI
in ND, very few receive SSI in ND
• When a child is SSI eligible, although they
generally will receive Medicaid under the aged
and disabled category, assets will be looked at
VS. other Medicaid categories for children
where there is an asset disregard
What is Medicaid?
Title XIX of the Social Security Act
is a program which provides
medical assistance for certain
individuals and families with low
incomes and resources
Medicaid
Medicaid is the
federal health
insurance
program for low
income children
and adults.
It is financed
through both
federal and
state funds.
What is Medicaid?
The program, known as Medicaid,
became law in 1965 as a jointly
funded cooperative venture between
the Federal and State governments
to assist States in the provision of
adequate medical care to eligible
needy persons.
HOW IS MEDICAID DIFFERENT FROM
MEDICARE?
Medicaid mainly serves low-income
families, while Medicare covers
elderly and disabled people who
receive Social Security, regardless of
their income.
Medicaid Funding
Currently, the federal government will
pick up more than 50% of the cost, but
not more than 75%. North Dakota’s
current federal match is 67.49%. Which is
a steady decline from previous years
Eligibility for Medicaid
Some of the Doors to Access
Medicaid
Medically Needy
TANF
SSI
SPED programs
No matter what door….
ALL Children are eligible for
EPSDT
EPSDT
Early Periodic Screening Diagnosis and
Treatment/ND Health Tracks
For children birth up to 21
The screen is the first step to accessing
EPSDT services
The screen is a HEAD to TOE
unclothed physical exam
Must prove medical necessity
Additional benefits when justified
EPSDT
Early & Periodic Screening, Diagnosis, & Treatment
• Medicaid’s comprehensive & preventive health
program for children under 21
• Provides screening & services at medicallyappropriate intervals
• Provides medically necessary health care services
even if the service is not available under State’s
Medicaid plan
States must inform
all Medicaid-eligible persons
under 21 that EPSDT is
available
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.
EPSDT lead poisoning prevention
• Required component of screening
• All children at 12 and 24 months
• Children over 24 months if no record of
previous test
• Medically-necessary diagnostic and treatment
services must be provided to child with elevated
blood lead level
Title XIX…
…is a medical insurance program that is
available to individuals who are eligible
for SSI.
…is Medicaid.
If you are eligible for SSI you are
eligible for Medicaid or “Title XIX”.
Identified Problem
• ND is a 209B state, which means the state has
it’s own eligibility requirements and SSI eligibility
is not an automatic qualifier for Medicaid
• Federally Medicaid reform is upon us, with
discussions of removing EPSDT requirements,
along with other federal mandates which could
hurt children and adults
Obtaining
Mental Health
Services
Identified Problems
Mental Health vs. Physical
Health
Dual Diagnoses
Mental Health Parity
needed
Families often have few
options, in some cases
relinquishing custody of
their child in order to
receive services
Other States Waiver
Program
“Disabled Children’s Program/Katie
Beckett Waivers”
• Children 0-18 who are living
with family who need nursing care and support
services.
• Child meets disability criteria for SSI, but is not
eligible due to parent’s income.
• Cost of in-home care cannot exceed the costs
in a medical facility.
Why is a Waiver So Important?
• Children with special health care needs is a
unique population.
• Nearly 90% are covered by private insurance, for
this population of children the problem is being
UNDERinsured.
Why is a Waiver So Important?
• Private insurance is not comprehensive for many of
these children, having caps and limits on services
• Children with significant needs need a combination
such as a waiver to assist them
• Families are having to impoverish themselves, file
bankruptcy, divorce, institutionalize, and garnish
custody in some cases to obtain services
• The needs are HUGE!
New News
• Legislative session authorized the development
of a waiver for medically needy children, limited
in number
• Authorization of study regarding children with
special health care needs
• Added Russell Silver Syndrome to CSHS
program
What is Children’s Special Health
Services (CSHS)?
• CSHS is a state program that
provides services to identify,
treat and coordinate the
health care and related
services of children with
chronic medical conditions
and disabling illnesses.
Title V CSHCN Programs
o To provide and promote family-centered,
community based, coordinated care for
children with special health care needs
o To facilitate the development of community
based systems of services for children with
special health care needs
Title V CSHCN Programs
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
o Application is made at local county social
service office
Identified Problem
• Federal cuts to the program, also reduces the
state match
• This could mean potentially changes in service
delivery, changes to programs and possibly a
decrease in the number of children served
Transition Realities
• 90% of YSHCN reach their 21st birthday
• 45% of YSHCN lack access to a physician who is
familiar with their health condition
• 30% of 18 to 24-year-olds lack a payment source
for health care
• Many youth lack access to primary and specialty
providers
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH,
2002
Transition Realities (cont’d)
• Increase annual use of emergency system of
care: 40% vs. 25% of typical youth
• Fewer work opportunities, and many are fearful
of losing Medicaid eligibility
• YSHCN are 3 times more likely to live on income
under $15,000
NOD/Harris Poll Survey, 2000
Transition Realities (cont’d)
Interruptions in
• Social/recreational activities – 64%
• Daily living activities – 59%
• Work – 58%
• School attendance and performance –
38%
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 1999-2002
Identified Problems
• Transition is not just about education, it involves
the health, recreation, independent living and
work
• Families and youth need to know their rights
and responsibilities early
• Services for youth also change.. meaning having
to learn an entire new system
Moving forward
• Many disability organizations deal in one way or
another with many of these issues
• Partnering with families and family
organizations is essential
• Working together, provides increased
empowerment
The Future of Health Care for
Children with Special Health
Care Needs
Trends in health care that each state will
be required to implement by the year
2010.
Healthy People 2010 Goals/Presidents New
Freedom Initiative
As They Relate to CYSHCN
• Family Participation and Satisfaction in
Decisions Around Care
• Access to Affordable Insurance
• Early and Continuous Screening
• Easy-to-Access Community-based Service
Systems
• Services Necessary to Transition to
Adulthood
• Access to a Medical Home
One approach to providing health
care services in a high-quality and
cost-effective manner is by
developing a “Medical Home”
Model in our state.
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 or health
provider:
– 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
Why Build Partnerships and
Collaborations with Families?
• Families with high parental
involvement are more likely to
engage in educational activities
with their children
• Highly involved families almost
double the positive odds for their
children
Adapted from NJ F2F
Why Build Partnerships with Families?
• Children with
concerned fathers and
mothers are more likely
to be healthy
• Families with high
parental involvement in
school and activities are
more likely to have
high expectations for
their children
Barriers to Collaboration
• Professional socialization, structure &
culture
• Agency structure, routine, & culture
• Legislative mandates or limitations
• Professional and agency self-interest
Barriers to Collaboration
• Inadequate understanding of strengths & needs of
children and families
• Inadequate family understanding of the needs &
skills of professionals and how to work with them
• Family resistance
Parent Attributes that Promote
Partnerships
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Warmth; Nurturance
Sensitivity
Ability to Listen
Consistency
Positive self-image
Sense of competence
Personal competence
Effective interpersonal
skills
• Success in prior
collaborations
• Openness to others’ ideas
Professional Attributes that Promote
Partnerships
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Warmth, Nurturance
Openness
Sensitivity
Flexibility
Reliability
Accessibility
Trust
Closeness
Positive self-image
Child-centeredness
Positive attitudes
Personal competence
Attributes of Successful Partners
• Confidence: Feeling able to
do it
• Motivation: Wanting to do it
• Effort: Being willing to
work hard for it
• Responsibility: Doing what’s
right
• Initiative: Moving into
action
• Perseverance: Completing
what you start
Attributes of Successful Partners
• Caring: Showing concern for
others
• Teamwork: working with
others
• Common Sense: Using good
judgment
• Problem-Solving: Putting what
you know and what you can
do into action
• Focus: Concentrating with a
goal in mind
Parent-Professional Collaboration
• Remember the cultural
context for parentprofessional
relationships:
– Each knows the child in
different contexts
– Different people often
have distinct and
disparate perspectives on
the same issue
Parent-Professional Collaboration
• Some parents may be
comfortable with their role as
their child’s advocate
• Other parents may:
– Be reluctant to express
concerns because of cultural
beliefs related to
authoritative position health
professionals
– Have difficulty talking
because of memories of
their own experiences
– Be unsure how to express
themselves
– Fear retaliation
Parent Professional Collaboration
• Parents may be
surprised to learn that
providers are equally
anxious about
relationships with
parents
• Most professionals
have received very little
training in fostering
relationships with
families
Making it Happen: Building Partnerships
• Build a foundation of
good feeling based on a
clear and consistent
message about the value
of the child
• Put yourself in the other
person’s shoes
• Persevere in building
partnerships
Making it Happen: Building Partnerships
• Expand awareness of
cultural diversity; become
culturally competent
• See individuals; challenge
stereotypes
• Demonstrate an
authentic interest in each
others’ goals for the
child
Making it Happen: Building Partnerships
• Discuss with each other
how information will be
shared
• Use everyday language
• Create effective forums
for effective collaborative
planning and problemsolving
Making it Happen: Building Partnerships
• Support the development of
long-term plans to offer full
membership to all children
and all families
• Ensure that building
collaborative partnerships is
an overarching goal each
year!
A Framework for Creating Partnerships
• Engage in joint learning
activities
• Support each other in
respective roles
• Carry out improvement
activities
• Conduct collaborative
projects
• Participate together in
decision-making activities
Welcome Families in Varied Roles
• Volunteers:
– Welcoming climate
– Survey families re: their
interests/skills
– Provide options to help
at various times/places
– Ensure activities are
meaningful
– Provide training for
families
– Show appreciation
– Educate staff members
Welcome Families in Varied Roles
• Provide
understandable,
accessible, wellpublicized processes:
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Influence decisions
Raise issues/concerns
Appeal decisions
Resolve problems
• Encourage formation
of parent groups to
identify & respond to
issues
• Include parents in
equal numbers on all
decision-making &
advisory committees
• Ensure adequate
training
• Provide parents with
current information
• Treat parent concerns
with respect &
demonstrate genuine
interest in solutions
Establishing a Collaborative Team: Checklist
for Professionals
• Do I really believe that
families are my equal, and in
fact, are experts on their
children?
• Do I speak plainly and avoid
jargon?
• Do I actively involve families
in all team tasks, including
developing, reviewing,
evaluating and revising plans?
Establishing a Collaborative Team: Checklist
for Professionals
• Do I meet at times and
places convenient to the
family?
• Do I respect the values,
choices and preferences of
the family?
• Do I share information with
other professionals to ensure
that families do not expend
unnecessary energy accessing
services?
Establishing a Collaborative Team: Checklist
for Professionals
• Do I show the same respect
for the value of families’ time
as I do for my own time by
becoming familiar with
pertinent information before
team meetings?
• Do I recognize and enhance
the variety of strengths and
coping styles of the family?
Establishing a Collaborative Team: Checklist
for Professionals
• Do I encourage the family to
bring a friend or advocate?
• Do I tell each family about
how to reach other families
in similar situations,
recognizing parents as a
major source of support and
information?
Establishing a Collaborative Team: Checklist
for Families
• Do I believe that I am an
equal partner with
professionals and do my
share of problem-solving
and planning to help my
child?
• Do I clearly express my own
needs and the needs of my
family to professionals in an
assertive manner?
Establishing a Collaborative Team:
Checklist for Families
• Do I treat professionals as
individuals and avoid
letting past negative
experiences get in the way
of a good working
relationship?
• Do I communicate quickly
with professionals when
significant changes and
events occur?
• Do I maintain realistic
expectations for myself,
professionals, and my
child?
What can we do for you?
• You can receive our
quarterly newsletter or
become a part of our
PASS IT ON list serv
• The list serv is private,
sending local, state and
national updates
Information and referral
• We offer individual
assistance and support
to families of children
with special health
needs, as well as the
providers who serve
them
Assistance in navigation
of the health system
Publications and Assistance
• We have a wide variety of resource information
for families and professionals. Videos, tapes,
books etc.
• Networking linkages: local, regional and
national links to assist in information needs
Other areas
• Workshops and trainings
• Linkage to community resources and assistance
• Connecting families to advisory committees and
boards
• Connecting families with support systems
necessary in raising their children
• Much, much more
How to contact Family Voices
North Dakota
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You may reach us by phone: 701-493-2634
Toll-free: 888-522-9654
Fax: 493-2635
E-mail: [email protected]
Web: http://www.geocities.com/ndfv/
Questions?