The Children with Special Health Care Needs Program allows a Public Health Nurse to spend
time with children who have special health concerns and their families. The nurse can
provide information and resources about the child's condition, emotional support for the
whole family, and community & health care referrals. There is a limited amount of
funding for special equipment needed by children in low income families.
Promoting
early identification and partnerships between families, primary health care providers
& the community.
SSI Benefits for Infants and Children with
Disability
Who is Eligible?
·Children (<18 y.o.) with a physical or mental condition(s) that
Have
been medically determined
Result
in marked limitations in 2 domains of functioning or extreme limitation in one domain
Last/are
expected to last more than 12 months or are expected to result
in death
And whose family’s income is under 200% of the federal poverty level
·Low birthweight (LBW) infants are
considered “disabled” for their first year if
Birth weight was <1200 grams or
Birth weight was
between 1200-2000 g. and > 2 standard deviations below the
mean for gestational age
And whose
family’s income is under 200% of the federal poverty level
What are the SSI Benefits?
·Monthly payments as little as $1/month up
to $545/month in 2008, depending on parental income, financial assets and number of children in the family
·Eligibility for open coupon Medicaid coverage
(able to choose any provider who accepts Medicaid)
·Referral to DSHS which can
Determine
eligibility for food stamps
Determine
eligibility for a personal care provider after the age at which a child is expected
to be independent. (This differs from respite care.) Medicaid may pay someone
(other than the parents), who is hired by the family, to help with daily living tasks such
as feeding a child >3 y.o. who cannot feed him/herself.
Refer to the Children with Special Health Care Needs (CSHCN) Program
of Washington’s Dept of Health.CSHCN provides case management and can assist
with the cost of medically necessary services not covered by other payers.
How do Families Apply for the SSI Program?
·Families can apply themselves; OR a Family Resources Coordinator or another
case manager can help them.
·Families can call SSA from 7 am to 7 pm (M-F) to request an application or to
ask questions. 1-800-772-1213 - English or Spanish (1-800-325-0778
for TTY).
Families who do not
speak English or Spanish should press “0” when they get the menu, identify their
native language and ask for an interpreter.
Families will be asked for the child’s social security number,
which can be obtained at any time after birth.
How Often Must Disability be Proven?
SSI requires documentation and
review to assure that the child continues to meet eligibility requirements. The
child’s status is reviewed:
Not
later than 12 months after birth for low birthweight babies
Every
3 years for SSI recipients <18 years whose conditions are likely to improve
(recipients under 18 years whose conditions are not likely to improve are reviewed
only on an “as needed” basis.)
At 18 years of age to determine
eligibility for adult SSI benefits (based on adolescent’s income, no longer
the parents’ income. A child who was not eligible before 18 years because of
parental income may become eligible after 18.)
What is the Role of the Primary Care Provider?
Recommend and facilitate
SSI application if the child seems likely to be eligible based on disability
(let
SSA determine eligibility relative to income/resources)
Provide clear
documentation of disability, functional deficits and prognosis on SSA forms. (If
the records are not thorough enough, a special examination of the child by a Disability
Determination team may be required.)
Connect the
family to a resource person for help with the application process if needed.
Provide updated
proof of disability when requested by SSA.
Island County Resources for Developmental Screening and Assessment:
For children
under age three:
Contact: Island County
Family Resource Coordinators (FRC)
Call 425-334-4071 x 128 for Camano Island 360-679-1039 North Whidbey 360-221-6808 x4420 South Whidbey
Toddler Learning Center
679-1039, Whidbey General Hospital Pediatric Rehab
678-7656 x2250,
and
Providence Children’s Center 425-258-7311 all provide therapy services for young children.
For children age
three and older:Contact: Local school district
District:
Name
Phone
District:
Name
Phone
South Whidbey
Mike Johnson
221-6100
Oak Harbor
Gale Cleveland
279-5073
Coupeville
Pat Range
678-4551
Camano
Call local school
South Whidbey
Mike Johnson
221-6100
Oak Harbor
Gale Cleveland
279-5073
Special Needs Information and Resources:
Local:
Melinda Kurtz, Island County Children
With Special Health Care Needs Coordinator
Kids who
are seen, or need to be seen, at Children’s Hospital in Seattle may be able to make
appointments at the Children’s Hospital Regional Clinic at Providence in Everett
(425) 304-6080. Initial exams
may need to be done at Children’s, if radiologic studies are required.
Providers can make the request on the referral and/or Parents can ask when they schedule
the appointment.
Available Clinics Are: Neurology, Cardiology,
Endocrinology, Gastroenterology –
Hepatology, Genetics, Pulmonary, Orthopedics, EEG Lab, and Nephrology.
When I think about Parent to Parent, I think it’s
like getting a helping hand when I most need it – to lift me up when
I am falling down.
For someone to walk by my side and let me know that
it’s okay to have a child with special needs, and that it’s okay to
feel what I feel – good and bad.
For me, Parent to Parent fills a hole in my life –
I do not feel so alone."
Teresa,
Volunteer Helping Parent from Yakima P2P Program
PARENT TO PARENT (P2P)
Support for Parents of a Child with Special Health Care Needs
All parents like to talk to other parents about their children.They enjoy sharing stories and learn from each
other by hearing the experiences of other parents.Parents
of children with special health needs have an even greater need for this kind of support
as they deal with unique issues not commonly shared by all parents. Their own parents or
close friends are often unable to provide first-hand guidance because of the special
health care need.Parents of children with
special needs may feel alone and isolated.They
tell us it is helpful to learn how other families have managed similar situations.Their first choice for emotional support is other
parents who have shared similar experiences.
As a primary health care provider, one of the best things you can do to
support a child with special health care needs is to connect the family to other parents.Parent to Parent is a nationwide program offering
this kind of emotional and informational support to families of children with special
needs and/or disabilities. The Washington State
Parent to Parent* is a network of 29 community programs serving all 39 counties in the
state.Activities include:
* Funded in WA by the Arc of Washington State,
the Department of Health Children with Special Health Care Needs, and the Office of the
Superintendent of Public Instruction.County
Programs also receive funding from the Division of Developmental Disabilities and locals
grants and donations.
Call Rene Denman 360-679-5358 to refer a parent to the
Parent to Parent program in Island County and ask Rene for P2P
brochures.
Island Hope Support Group Group for all parents/guardians of children with any
type of disability.
Meets in Oak HarborCall
Laura Evans for more information 679-1995
Circle of Friends Network For people with disabilities and those who care
about them ages 13 toadulthood
Meets in Oak HarborCall
Valerie Hooton675-0668 for more
information
South Whidbey Parent Support Group Meets
in ClintonCall Tonah Potter for more
information 730-233
Island County Dad’s
Night Out Meets
at Greenbank Farm, 1st Thurs. each month from 7 to 9 p.m.
Call Mike Etzell
for more information
678-7883 or 321- 5111 x7883 or 629-4522 x7883
"Transition To Adulthood"
An Island County CouncilBegan
Meeting in the Fall of 2004 Please Contact
Mike Etzellif you are interested in being involved:
321-5111x7883 or 678-7883
"For many dads, it's the
first time they've experienced this kind of support, and the effect can be powerful and
immediate.I've seen dads change right before
my eyes the moment after they tell their story."
Contact Mike Etzell
If you are interested inbeinginvolved:
321-5111x7883 or 678-7883
THE
FATHERS
NETWORK* Support for Fathers of Children with Special Needs
Fathers of children with special health care needs have special needs
of their own.They may need to grieve the
loss of a typically developing child.They
may have been expecting to have a child with whom they could share particular hobbies or
sports.These hopes may have been dashed.In the case of a male child, they may have
entertained dreams of a father-son relationship which they now fear may not be realized.The father of a child with special needs may be
looking for information and support to care for himself, his child, and his family.
Although fathers were once thought to have a limited role in
parenting, we now know that fathers are vital to the well-being of the family.Fathers of children with special needs, however,
report often feeling left out of their child’s care, left out because they cannot be
present for all of their child’s appointments, left out because the focus is placed
on the mother and on making sure her needs are met.Care
providers may look to the mother when setting goals for the child.Fathers of children with special needs deserve to
be recognized, included and supported, as much as mothers do.
One of the best ways a medical home provider can support a child is
to support the child’s whole family.The
Washington StateFathers Network* is a resource you can offer to fathers of
children with special health care needs.
*A network of 15 chapters providing
support, mentoring programs and fellowship to fathers of children with special needs, and
offering resources which include:
Events
specifically designed for fathers, uncles, brothers and other men who provide care for a
child with special needs
web site with
personal stories from fathers of diverse backgrounds (www.fathersnetwork.org)
Informational
materials on fathers’ issues, in print and web formats, in English and Spanish (and
other languages when possible)
A statewide
newsletter and an e-newsletter
Monographs and
videos for sale which were designed to enhance the involvement of fathers in the home,
health care settings and schools
Opportunities for
fathers to be involved in improving systems of care for children with special needs (in
collaboration with the WA State Department of Health)
*A
program of the Kindering Center, funded by the Washington State Department of
Health/Children with Special Health Care Needs Program, the Paul G. Allen Family
Foundation, Washington Council for Prevention of Child Abuse and Neglect (WCPCAN),
and private
