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Resources
There are a number of
programs available that can assist families in caring for their child.
Overview of Programs
This is a difficult chapter to pull
together as there are very few federal resources for families in the US or
anywhere else for that matter. I will try and offer places for you to go to
start in finding the help you need with your children. When applicable I am also
including information directly from families with suggestions for helping to
find help in your area. I am also listing families who have agreed to be
resource contacts for their state. This is not in any way a complete list but
merely some suggestions on where to start.
I’m including information for each state
on the following programs
From Kammy, mom to Jason age 3 in
Mississippi As someone who has been trying to understand the "system" here in
the U.S. for the last 3 years, I still consider myself relatively new to all
this! I am still not sure what is and isn't covered in Mississippi as that
information apparently is "classified". I only know by asking for something and
then being turned down. Alas, this also is not consistent so something might be
denied one time and approved the next, or vice versa. If I ever figure the
system out, I will write a chapter for you on how to do it!
There are several different programs - some federally funded; some state funded;
and some federally funded and managed by each individual state. That's why it is
so dang confusing! In addition, officials are sometimes less than helpful
because deliberately or not, they don't like people to find out about programs
because they don't want to spend the money. So far, this is what I
understand....
Social Security should be one of the first stops. This is federally funded and
federally managed. It provides money for a disabled child living at home, but
I'm not sure that is the exact name of the program. This particular program has
nothing to do with parents' assets or income. However, I met one mom who told me
they actually lied to her and gave her the runaround for almost 2 years before
someone at SS finally confessed the program exists. We applied for this program
shortly after Jason was born. We were denied - because they evaluated us for the
wrong program. We were supposed to reapply but I never got around to it. I do
need to do this, as SS will provide several hundred dollars per month to cover
whatever is not covered by insurance, etc. Whatever program this is, it used to
be listed prominently on the SS homepage. The link has since been removed.
(Thank you so much President Bush - your tax cuts for the wealthy and your
austerity program really touches my heart!)
There is also a SS program that takes into account the parents' resources, that
helps kids. I have no idea what it is called and I do not know if you can be on
more than one SS program at a time.
There are two things you can do if you are having problems with SS. The first
is to hire an attorney. I don't know what it costs but even some SS officials
will tell you after your first denial to hire an attorney. Go figure!
The second thing you can do is call your federal representative. Here in MS, we
have Trent Lott. Love him or hate him, he is a very powerful man and has a very
good relationship with SS. He can usually fix things with one phone call. In
matters of SS, your state or local rep can't do squat.
After you apply for SS (or before, doesn't really matter) there is a federally
funded, state run program called Medicaid. (California just has to be different
so they call theirs "MediCal". I do not know if any other states have a
different name for Medicaid). Medicaid is a health program usually for the
poor. However, they also have a special program for disabled child in the
home. That is what it is called here but it may be slightly different in each
state. This program also has nothing to do with the parents' resources. The
only way a child would not qualify for SS and Medicaid is if the child had a
trust fund, and I don't know how big it would have to be. We have made sure we
have absolutely no accounts, even a small savings one, in Jason's name. I also
do not know what would happen to our benefits if we were to sue on Jason's
behalf but it's an interesting question. You apply for Medicaid through your
state Medicaid office. Type
your state name followed by the word Medicaid and you will find the right place
to start.
Anyway, federal law mandates some services that are mandatory for disabled
children. Therapy, for example, is mandated for all disabled children. The
catch is that the child must meet the standards set by the state to qualify for
each type of therapy. We've gone round and round on this for Danny. Danny has a
major communication problem. However, he is able to speak clearly so he does
not qualify for speech therapy of any kind. As speech therapy also facilitates
communication skills, I think this is pathetic. They just don't want to spend
the money. This is also why some of the kids on the list, no matter how
ridiculous the ruling, are not getting some of the therapy services they need.
The issue of how states evaluate and define criteria for disabilities is working
through a number of the courts right now. As Medicaid is managed by each
individual state, there is a lot of discrepancy. The process of selecting
criteria for a disability is horrible in Mississippi and has caused us many
headaches for both Jason and Danny.
There are also optional services which states may choose to offer under
Medicaid. Things like home nursing. You can find a lot of this information
under each states Medicaid pages. It would be a lot of work but you might think
about including a link to each state's Medicaid office.
If you have problems with Medicaid, go to your state level legislature. Getting
local politicians (mayors, supervisors, etc.) to raise their voice on your
behalf is also good. Go to the media!! I cannot stress this enough. When
problems are handled at the state level, the media is a powerful ally. Problems
on the national level are harder as you really have
to make the national news to get results but don't discount the media here
either.
Then there is Medicare. Primary for the elderly, this is another supplemental
insurance program for the poor. However, a disabled person may receive Medicare
benefits if they have been on SS disability for two years. I don't know the age
range Medicare covers - I always thought it was just adults. But I have been
hearing rumors it may also cover some disabled children’s expenses. There is a
web page out there somewhere for Medicare but I was not able to decipher it and
I can't remember the address. I think if you just Google Medicare, you can get
there.
Then there are early intervention programs, again federally funded and managed
by individual states. Here in Mississippi, it is called "Project Prints". If
you type the name of a state and the words "early intervention" in quotes into
Google, the proper page will appear somewhere in the first page of results.
Note that your state may manage your early intervention program through a
department completely separate from Medicaid, and that the two rarely talk,
unless it is to your disadvantage! They will not work together to coordinate
your child's services but they will collaborate to identify "duplicate services"
which they will then attempt to cut off.
Another note... if you are new to this journey, you should either plan on taking
a vacation or quitting work for a while. You will be spending days and days on
the phone just collecting information about what is available and how to apply.
Afterwards, you will need a good, stiff drink and some Tylenol.
Finally, many states, but not all, have other state funded programs to help
out. We have very little available in Mississippi but two I have spoke with are
CHIPS (low income medical assistance - we did not qualify) and the Children's
Medical Program, which did help us to buy parts for a used bath chair. Again,
you have to search each individual state and some are far more giving than
others, but there are a number of small programs out there that really make a
difference.
Title V
"What is Title V and How Can it Help You?"
http://internet.dscc.uic.edu/dsccroot/titlev.asp
An introduction to State Title V
Programs for CSHCN, by John Reiss*
Every state and the District of Columbia
has a Title V Program for Children with Special Health Care Needs (CSHCN) that
is funded, in part, through the Federal Title V Maternal and Child Health Block
Grant. These programs began in 1935, when Congress passed the Social Security
Act, a law designed to bring some financial and health security into the lives
of America's most vulnerable citizens. The fifth article of that act, known as
Title V (five), provided funds to states to develop and operate public health
care programs for certain children with special health care needs as well as to
establish other programs to promote the health of low income mothers and
children.
In the 1930's through the 1970's most of
the state Programs that were funded through Title V of the Social Security Act
were called Crippled Children's Services (CCS) Programs and focused their
efforts on identifying "crippled" children and providing services for the
diagnosis, treatment and ongoing care of "crippled" children. Children initially
served through these programs were limited to those with orthopedic problems
frequently caused by Polio. In the 1960's,1970's, and 1980's there was a gradual
expansion of these programs in many states, and state Title V CCS Programs began
to provide health and related services to children with other serious chronic
health conditions and physical disabilities, such as cerebral palsy, heart
problems, hearing problems, spina bifida, cystic fibrosis, etc. In the late
1970's Congress funded state CCS Programs, through Title V, to provide case
management and care coordination services to children under the age of 16 who
received benefits through the Supplemental Security Income (SSI) Program.
As a result of the expansion of the
eligibility criteria of state CCS Programs, more and more children with chronic
illnesses, developmental disabilities, sensory impairments, and other special
health needs were being served. In recognition of this expanding responsibility
and in response to criticism that the term "crippled children" was stigmatizing,
Congress changed the name of this program in the Title V statute to State
Programs for Children with Special Health Care Needs (CSHCN). In response to
this change in federal legislation all states' Title V Program's have deleted
the phrase "crippled children" from their name. However, because the legislation
did not mandate that states use a specific name, Title V CSHCN Programs are
known by different names in different states. Names given to CSHCN Programs
include: "Children's Medical Services", "Children's Special Healthcare
Services", "Child Health Specialty Clinics", and "Division of Specialized Care
for Children". The federal Title V legislation also gives states the flexibility
to use their Title V funds to design and implement direct care programs and
services that are responsive to the specific needs of CSHCN and their families
in the state, and accommodate the strengths and limits of the child health
infrastructure in the state. Therefore, state Title V CSHCN Programs have
different financial eligibility criteria, serve different populations of
children and youth with special health care needs, and provide and/or fund
different sets of health care and related services. This can be confusing for a
family with a child with special health needs, when moving from one state to
another.
Because of the significant differences
among state Title V CSHCN Programs, the Maternal and Child Health Bureau has
supported the development of the "Directory of State Title V CSHCN Programs:
Eligibility Criteria and Scope of Services" through a grant to the Institute for
Child Health Policy at the University of Florida. The information contained in
this report is available through the Internet.
In addition to providing direct,
personal health care services to eligible children, state Title V Programs also
have a responsibility to improve the quality and responsiveness of the overall
health care system for children with special health care needs. State's were
given this "systems development" responsibility in 1989, when Congress amended
Title V of the Social Security Act, and required that state CSHCN Programs
"provide and promote family-centered, community-based, coordinated care
(including care coordination services) and to facilitate the development of
community-based systems of services for such children and their families." The
1989 amendments also allowed state Title V Programs to continue to use federal
funding to provide rehabilitation services to children under the age of 16 who
receive benefits through the SSI Program.
Over the last ten years, the Maternal
and Child Health Bureau, at the Federal level, in partnership with state Title V
CSHCN Programs, family leaders, and other professional and advocacy
organizations have focused a significant level of effort on defining,
describing, and making family-centered, community-based care available to all
CSHCN and their families.
Family-centered care is a process that
focuses on ensuring that:
the organization and delivery of health
care services meet the emotional, social, and developmental needs of children;
the families of CSHCN are integrated
into all aspects of the health care plan;
families have alternatives and choices
based on their own needs and strengths and receive support for those choices,
and
the health care system facilitates
family/professional collaboration at all levels, especially in planning,
implementing, and evaluating programs and their related policies and practices.
To accomplish this, state Title V CSHCN
programs have worked to develop meaningful partnerships with families and
promote leadership by families. State programs also provide the training,
guidance, and policies that create these partnerships within each community as
it builds its systems and services.
Thus, the activities of state Title V
CSHCN Programs are not limited to providing and paying for health care for
eligible children. Rather, these Programs also fund family-to-family support
organizations and support families in their efforts to play an active role in
the development of program and policies that are of benefit to all children with
special needs and their families.
Nutrition Program Facts Food and Nutrition Service
WIC The
Special Supplemental Nutrition Program for Women, Infants and Children
1.What is WIC?
WIC provides nutritious foods, nutrition counseling, and referrals to health and
other social services to participants at no charge. WIC serves low-income
pregnant, postpartum and breastfeeding women, and infants and children up to age
5 who are at nutrition risk. WIC is not an entitlement program; that is,
Congress does not set aside funds to allow every eligible individual to
participate in the program. Instead, WIC is a Federal grant program for which
Congress authorizes a specific amount of funding each year for program
operations. The Food and Nutrition Service, which administers the program at the
Federal level, provides these funds to WIC State agencies (State health
departments or comparable agencies) to pay for WIC foods, nutrition counseling
and education, and administrative costs.
2. Where is WIC available?
The program is available in all 50 States, 33 Indian Tribal Organizations,
America Samoa, District of Columbia, Guam, Puerto Rico, and the Virgin Islands.
These 88 WIC State agencies administer the program through 2,200 local agencies
and 9,000 clinic sites.
3.Who is eligible?
Pregnant or postpartum women, infants, and children up to age 5 are eligible.
They must meet income guidelines, a State residency requirement, and be
individually determined to be at “nutrition risk” by a health professional. To
be eligible on the basis of income, applicants’ income must fall at or below 185
percent of the U.S. Poverty Income Guidelines (currently $33,485 for a family of
four). A person who participates or has family members who participate in
certain other benefit programs, such as the Food Stamp Program, Medicaid, or
Temporary Assistance for Needy Families, automatically meets the income
eligibility requirement.
4. What is “nutrition risk?”
Two major types of nutrition risk are recognized for WIC eligibility: •
Medically-based risks (designated as “high priority”) such as anemia,
underweight, maternal age, history of pregnancy complications, or poor pregnancy
outcomes. • Diet-based risks, such as an inadequate diet. Nutrition risk is
determined by a health professional such as a physician, nutritionist, or nurse,
and is based on Federal guidelines. This health screening is free to program
applicants.
5. How many people does WIC serve?
More than 7 million people get WIC benefits each month. In 1974, the first year
WIC was permanently authorized, 88,000 people participated. By 1980,
participation was at 1.9 million; by 1985 it was 3.1 million; and by 1990 it was
4.5 million. Average monthly participation for Fiscal Year (FY) 2002 was
approximately 7.47 million. Children have always been the largest category of
WIC participants. Of the 7.47 million people who received WIC benefits each
month in FY 2002, approximately 3.74 million were children, 1.93 million were
infants, and 1.8 million were women.
6. What percent of eligible people does
WIC reach?
It is currently estimated that WIC has achieved full coverage of all eligible
infants. About 47 percent of all babies born in the United States participate in
WIC. Of all eligible women, infants, and children, the program is estimated to
serve about 90 percent.
7. What food benefits do WIC
participants receive?
In most WIC State agencies, WIC participants receive checks or vouchers to
purchase specific foods each month that are designed to supplement their diets.
A few WIC State agencies distribute the WIC foods through warehouses or deliver
the foods to participants’ homes. The foods provided are high in one or more of
the following nutrients: protein, calcium, iron, and vitamins A and C. These are
the nutrients frequently lacking in the diets of the program’s target
population. Different food packages are provided for different categories of
participants. WIC foods include iron-fortified infant formula and infant cereal,
iron-fortified adult cereal, vitamin C-rich fruit or vegetable juice, eggs,
milk, cheese, peanut butter, dried beans/peas, tuna fish and carrots. Special
therapeutic infant formulas and medical foods are provided when prescribed by a
physician for a specified medical condition.
8. Who gets first priority for
participation?
WIC cannot serve all eligible people, so a system of priorities has been
established for filling program openings. Once a local WIC agency has reached
its maximum caseload, vacancies are filled in the order of the following
priority levels: • Pregnant women, breastfeeding women, and infants determined
to be at nutrition risk because of a nutrition-related medical condition. •
Infants up to 6 months of age whose mothers participated in WIC or could have
participated and had a serious medical problem. • Children at nutrition risk
because of a nutrition-related medical problem. • Pregnant or breastfeeding
women and infants at nutrition risk because of an inadequate dietary pattern. •
Children at nutrition risk because of an inadequate dietary pattern. •
Non-breastfeeding, postpartum women with any nutrition risk. • Individuals at
nutrition risk only because they are homeless or migrants, and current
participants who, without WIC foods, could continue to have medical and/or
dietary problems.
9. What is the WIC infant formula rebate
system?
Mothers participating in WIC are encouraged to breastfeed their infants if
possible, but WIC State agencies provide infant formula for mothers who choose
to use this feeding method. WIC State agencies are required by law to have
competitively bid infant formula rebate contracts with infant formula
manufacturers. This means WIC State agencies agree to provide one brand of
infant formula and in return the manufacturer gives the State agency a rebate
for each can of infant formula purchased by WIC participants. The brand of
infant formula provided by WIC varies from State agency to State agency
depending on which company has the rebate contract in a particular State. By
negotiating rebates with formula manufacturers, States are able to serve more
people. For FY 2002, rebate savings were projected to be $1.57 billion,
supporting an average of 2 million participants each month, or 28 percent of the
estimated average monthly caseload.
10. What is WIC’s current funding level?
Congress appropriated $4.462 billion for WIC in FY 2002. The appropriation
includes $10 million for the WIC Farmers’ Market Nutrition Program. By
comparison, the WIC Program appropriation was $20.6 million in 1974; $750
million in 1980; $1.5 billion in 1985; and $2.1 billion in 1990. For more
information: For more information, contact the USDA Food and Nutrition Service
(FNS) Public Affairs Staff at 703-305-2286, or by mail at 3101 Park Center
Drive, Room 914, Alexandria, Virginia 22302. Information on FNS programs is
available on the World Wide Web at
www.fns.usda.gov
The Individuals with Disabilities
Education Act (IDEA) requires all state and territories to provide early
intervention and preschool special education for children with disabilities and
special healthcare needs. There are 2 separate programs listed in directories:
Part C: Infant and toddler programs
serving children from birth to age 3
Section 619: Preschool Special Education
programs serving children from ages 3-5
Medical Assistance Support
Helping Patients
http://www.helpingpatients.org/index.cfm
This site helps people find medical
assistance programs that they might be eligible for
Medical Flight Assistance Programs
Miracle Flights for Kids
http://www.miracleflights.org
They provide free flights for children
needing to access medical care in a different area.
Financial Planning
Planning for your child with special needs
http://www.metlife.com/Applications/Corporate/WPS/CDA/PageGenerator/0,1674,P1265,00.html
Home Modification Information
Links
http://www.familyvillage.wisc.edu/general/homemods.html
Respite Information and Links
RESPITE temporary relief for caregivers and families, is a
service in which care is provided to people with disabilities or other special
needs; to people with chronic or terminal illnesses; or to individuals at risk
of abuse and neglect. (This site has a ton of links to information about
respite programs in the US.)
http://www.archrespite.org/
It includes a link to a site that allows
you to search for respite programs in your area
http://www.respitelocator.org/index.htm
Pamphlet about respite care
http://www.nichcy.org/pubs/outprint/nd12txt.htm
Residential Facilities links
http://www.familyvillage.wisc.edu/general/residential.html
Links to information on travel for
someone who is disabled
http://www.familyvillage.wisc.edu/general/air-travel-information.html
Canada
This organization "Grants small wishes
to promote hope, happiness, and self esteem"
It’s for children ages 3-16. I’m not
sure if children with Hydranencephaly would qualify or not. They provide wishes
such as camp programs, family entertainment gifts and gifts to hospital
programs.
Children's Wish Foundation of Canada - Canada
http://www.childrenswish.ca/
See below for my experiences with this organization.
This is an organization that is a sore
point for many families. Although we’re told that their criteria is that a child
have the intelligence level of a 3 year old (thus disqualifying most children
with hydranencephaly) some children including my Kayda have had wishes from
them. Yet, others have been turned down. They denied Trevor a wish (Duchenne
Muscular Dystrophy, cognitive level at about 1 year). It seems that each office
has different criteria and that these criteria change frequently.
Starlight Foundation Canada
http://www.starlightcanada.org/
Serving British Columbia
Starlight British Columbia Office
www.starlightcanada.org
#350 - 1275 West 6th Avenue
Vancouver, BC V6H 1A6
Canada
Phone: (604) 742-0272
I’m pretty sure this is the first
organization I contacted for a wish for Kayda. They were actually quite rude to
me and although they insisted that yes they did provide wishes for non verbal
multiply handicapped children, they turned Kayda down without even seeing her as
she was non verbal and therefore couldn’t say what her wish was.
Serving Ontario
Starlight Toronto
www.starlightcanada.org
2770 14th Avenue, Suite 100
Markham, Ontario L3R 0J1
Canada
Phone: (905) 752-7827
Fax: (905) 752-7828
Serving Quebec
Starlight Montreal
www.starlightcanada.ca
360 St. Jacques Street, West, Suite 300
Montreal, Quebec H2Y 1P5
Canada
Phone: (514) 288-9474
Sunshine Foundation Canada
https://www.sunshine.ca/index.cfm
As outlined in the following criteria a
child with Hydranencephaly likely wouldn’t qualify for a wish from this
organization.
Sunshine has five criteria for
eligibility. The child must:
live in Canada
have a severe physical disability or a life-threatening illness
be 3-19 years of age (not yet turned 20) and have at least the cognitive ability
of a three-year-old
be able to formulate his or her dream (this must be the dream of the child) and
communicate the dream with or without technical assistance
have not already received a dream or wish from a similar organization (however,
the child may have participated on a Sunshine Dreamlift)
The dream and its cost and safety are
considered; we do not provide trips to dangerous places; or motor vehicles,
boats, all terrain vehicles, shopping sprees, medical equipment; or trips to
seek medical aid or to medical conferences. We must be able to cost the child’s
dream within our spending limits.
US
Children’s Wish Foundation
http://www.childrenswish.org/
Some of the children with Hydranencephaly have received wishes through this
organization and others have been denied. I was able to get a wish for Trevor
from them although he is non-verbal, yet a child with Hydranencephaly in our
area was denied. I was told that with non-verbal children they assess each wish
on an individual basis. They want to know that the child will appreciate the
wish.
Kids Wish Network
http://www.kidswishnetwork.com/
This organization looks really good and
from what I read children with Hydranencephaly could qualify for a wish. They
also help with funeral costs for children they have granted wishes for.
Make a Wish Foundation
http://www.wish.org/
This is an organization that is a sore
point for many families. Although we’re told that their criteria is that a child
have the intelligence level of a 3 year old (thus disqualifying most children
with hydranencephaly) some children including my Kayda have had wishes from
them. Yet, others have been turned down. They denied Trevor a wish (Duchenne
Muscular Dystrophy, cognitive level at about 1 year) due to low cognitive level.
It seems that each office has different criteria and that these criteria change
frequently.
Starlight Children’s Foundation
http://www.starlight.org/
I couldn’t find any eligibility
requirements for this organization either
To find a chapter in your area go to:
http://www.starlight.org/intl/about/chapters.htm
Sunshine Foundation
http://www.sunshinefoundation.org/
Criteria to Refer a Child:
- The child must be between the ages of 3-21.
- The child must be seriously ill, physically challenged or abused.
- Sunshine does not fulfill requests for children who have had a previous dream
granted by any organization.
-Sunshine's sole purpose is to answer the dreams of ill children whose families
cannot fulfill their requests due to the financial strain that the child's
illness may cause. For this reason, families with incomes at or above $75,000 a
year cannot be considered.
-Please note: For financial reasons, Sunshine Foundation can no longer consider
dreams for children with deficit disorders, mild to moderate developmental
delays, or mild to moderate autism (only children with severe to profound autism
will be considered).
Regional Organizations
Florida:
http://www.dream-a-wish.org/ It says no child is turned away and they grant
wishes to those who are terminally ill or severely disabled.
Indiana:
http://www.indywish.org/ Looks good. I couldn’t find any criteria of
eligibility other than that the child has to live in Indiana.
Eastern Washington or Idaho: Wishing
Star
http://www.wishingstar.org/
Anyone can refer a child to Wishing
Star! Just call 509-744-3411 or contact a member of a Wishing Star Volunteer
Chapter. Referrals can also be made by email to
wishcoordinator@wishingstar.org
. The only qualifications for referral are that the child be between the ages of
3-21, are in Eastern Washington or Idaho, the child has not already received a
wish and that the child's doctor will certify the child has a life-threatening
illness.
UK
Dial a Dream
http://www.dial-a-dream.co.uk/Applications.htm
I’ve included the criteria for this
organization. The sticking point for a child with hydranencephaly may be the
“dream must be that of the child”. I don’t know of anyone who has had a wish
with this organization.
Serving the United Kingdom
Starlight Foundation UK
www.starlight.org.uk
info@starlight.org.uk
Macmillan House
Paddington Station
London, W2 1HD
United Kingdom
Phone: +44 (0) 20 7262 2881
Australia
Starlight Australia
www.starlight.org.au
80 Chandos Street, Suite 2, 3rd Floor
St. Leonards, NSW 2065
Australia
Phone: +6129.437.4311
Resources by state or
country
In the Book: "Caring For Your Child With Hydranencephaly" there is a section
Part 7 Appendix 2 State Resources) which contains a list of resources that may
be useful for families for each state and/or country. The following links are
where I obtained the information:
http://www.yellowpagesforkids.com/
http://www.nichcy.org/states.htm
http://cshcnleaders.ichp.edu/TitleVDirectory/directory.htm
https://perfdata.hrsa.gov/mchb/mchreports/link/state_links.asp
http://www.fns.usda.gov/wic/Contacts/statealpha.HTM
http://www.cms.hhs.gov/home/medicaid.asp (I can't find the link used in the
book)
http://www.respitelocator.org/index.htm
http://eparent.com/resources/directories/directories_van.cfm
Other pages in this section:
Resources Glossary
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to Resources Table of contents page
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