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Could someone check tosee
how many of the people
listed are coming to this
meeting 7 They've all been
Ignore invided those with a
DianaF.
FAMILY
OICES
Ciro V. Sumaya, M.D., M.P.H.T.M.
Administrator
Health Resources and Services Administration
Rockville, Maryland 20857
Board of Directors
Betsy Anderson
Massachusetts
November 11, 1996
Allan Bergman
District of Columbia
Kathleen Kirk Bishop
Dear Dr. Sumaya:
Vermont
Gayle Brown
Kentucky
Your letter from several weeks ago has taken a prominent place on my
Connie Garner
desk. It reminds me that I must send you a response that reflects my
Virginia
Pat Hackett-Waters
gratitude for your understanding of the dilemma shared by so many families
Florida
who have children with special health care needs. Your letter also makes it
Denny Hoyt
Iowa
clear that there are many people, not all of them families and front-line
Vince Hutchins, MD
health professionals, who also worry about the future of our children with
Maryland
Gail Johnson
special health care needs. Clearly, there is a heightened awareness about
Maryland
these children and the federal policy that guides services, programs, and the
Lou Landry
allocation of resources on their behalf.
Idaho
Bev McConnell
Michigan
It was heartening to read in your letter that HRSA's Maternal and Child
John Reiss
Florida
Health Bureau (MCHB) supports families as partners and believes in the
Josie Woll
inclusion of our children in MCHB initiatives. We have seen such inclusion
Hawaii
occurring recently within the MCHB in divisions beyond the Division of
Staff
Services for Children with Special Health Care Needs (DSCSHCN), where
Polly Arango
New Mexico
such efforts were developed and nurtured over the years. It was also
Julianne Beckett
heartening to see that the MCHB chose to maintain the presence of the
Iowa
Trish Thomas
DSCSHCN in its reorganization. However, it appears to many of us that as
New Mexico
the MCHB reorganizes, resources and programs are being taken from the
Nora Wells
Massachusetts
Division and moved into other parts of the MCHB. As that occurs, we wonder
how the MCHB will assure us that an adequate focus on children with special
Regional Coordinators
Cindy Arceneaux
health care needs can be maintained and that policies and services for our
Southeast
children with special health care needs will have the attention and resources
Ericka Cade
Central
they require.
Bob Craig
Atlantic
This may appear to be an arcane issue and one that families have
Cassie Johnston
West
historically not been involved in. If these were ordinary times, we families
Sally Maxey
Mountains
would be more than happy to leave the reshuffling of bureaucracies to others.
Heather Bennett McCabe
However, on a daily basis, our children with special health care needs and
Mid-Atlantic
their families face a number of crises. Increasing managed care mandates,
Barbara Popper
Northeast
decreasing employer-based health insurance, Medicaid cuts, Welfare Reform
Ceci Shapland
restrictions, and state budget cuts all impact our children and present
Northern Plains
Bill Stumpf
families with an almost unbearable onslaught of change. Of all the times
Central Plains
when we need a distinct, high profile "federal home" that will protect and
Trish Thomas
Southwest
develop good health policy for our children, it is now.
A National Grassroots Network of Families and Friends Speaking on Behalf of Children with Special Health Care Needs
P.O. Box 769, Algodones, New Mexico 87001 / Tel 505/867-2368 / Fax 505/867-6517
Therefore, it is important for Family Voices and our 10,000 member
families to know if the DSCSHCN will continue to have the federal
responsibility for providing a permanent, well-defined federal focus on this
vulnerable population. And, if so, what assurances do we have that the
DSCSHCN will have the resources it requires to fulfill that role?
Thank you SO much for caring about our children and understanding why
we families must be outspoken in our commitment to our children. By the
way, I will be in Rockville on Monday, December 9. Would it be possible to
meet with you then?
Arango
cc: Secretary Donna Shalala
Dr. Audrey Nora
Ms. Diana Fortuna
EXECUTIVE OFFICE OF THE PRESIDENT
20-Nov-1996 11:21am
TO:
FORTUNA_D
FROM:
Richard J. Turman
CC:
Nancy A. Min
CC:
Barry T. Clendenin
CC:
Chin-Chin Ip
CC:
Wm G. White
SUBJECT: Re: 2 programs
Message Creation Date was at 20-NOV-1996 11:13:00
You had also asked about HRSA's "Division of Services to Children with Special
Health Care Needs, which is part of the MCH bureau."
Two things:
1) states are required to use at least 30% of whatever they get from HRSA's MCH
Block grant on children with special health care needs (Section 505 (a) (3) (B) of
the Social Security Act). The state portion of MCH goes up by $58 million
under the proposed funding levels, so state funding for these children would go
up.
2) as for HRSA's specific program office that consults with states on how
states spend their 30% of the MCH block on such children (among other things),
we don't have any particular number or proposal. We give HRSA one big number
for their administrative operations (we've provided $101 million in FY98, down
from $113 million in FY97 to reflect reduced administrative spending on health
professions, Healthy Start, and other small HRSA grants), and let them spread
it to this Division, as well as to all other Divisions and Bureaus. It would
be very rare for us to indicate to HHS how much to give a particular sub-office
of administrative types, because this would be intruding in a big way into the
management flexibility of the MCH Bureau and of the Administrator of HRSA, Ciro
Sumaya.
Give us a call with any further q's!
I have a 10:00 commitment
I'm late for - - : apologize,
Children with Special Health Care Needs Meeting--Fri., Dec. 20--9:00-10:00 am--729G
Person
Position
Phone Number
Fax Number
Polly Arango
Family Voices
(505) 867-2368
(505) 867-6517
Julie Beckett
Family Voices
(319) 395-7349
(319) 395-7085
Dr. Phil Lee
Asst. Secy. for Health
690-7694
690-6960
Olivia Golden
Acting Asst. Secy. for the
401-2337
401-4678
YES
Admin. on Children & Families
?
(Dr. Ciro Sumaya)
Health Resources and
(301) 443-2216
(301) 443-1246
NO
Douglloyd Doug
Services Administrator
Dovg Llon 1
Dr. Audrey Nora
Director, Maternal and
(301) 443-2170
(301) 443-1797
YES
Child Health Bureau
Dr. Merle
Director, Services for
(301) 443-2350
(301) 443-1728
YES
McPherson
Children with Special Health
Care Needs Division
Mary Beth Donahue
Deputy Chief of Staff
690-6133
690-7755
YES
Ann Rosewater
Deputy Asst. Secy. for
690-7409
690-6562
YES
Policy and External Affairs
Joan Lombardi
Director, Child Care Div. of 401-6947
690-5600
CEPT
MSG.
Mimi
Children's Bureau
CEPT
Bob Williams
Commissioner, Policy,
690-5806
401-9507
MSG.
Plans, & Programs
Carol Williams
Deputy Commissioner,
205-8618
260-9345
CAROL WILL BE OFF;
SHE'LL SEND
Policy, Plans, & Programs
SOMEONE +WILL
CALL W/INFO 12/19
Reginald Wells
Deputy Commissioner,
690-5806
690-7668
Policy, Plans, & Programs
YES
Mary Clankson
Sally Richardson
Deputy Admin., HCFA
690-6726
690-6262
YES
Connie Garner
DAS- Earl FOX-MOH
205-8124
205-9252
YES
Nancy-Ann Min
OMB
5-5178
LEFT MS6.
Richard Turman
OMB
5-4926
LBFT MSC.
Boufford +1
Minn-
Heth+Diab-HeadStant
RuthKatz
THE FEDERAL ROLE IN PROTECTING CHILDREN WITH SPECIAL HEALTH
CARE NEEDS: A FAMILY PERSPECTIVE
The Problem: There is no consensus from the federal government about its role
regarding policy, services, and resources for children with special health care needs
(children with disabilities and/or chronic health conditions). In fact, the vagaries of
federal policy for our children are symbolized by the absence of federal agreement
on a working definition of "children with special health care needs". Absent a coher-
ent federal policy, this sense of ambiguity about our children results in: confusion
about leadership and a champion for these children and their families within the
federal bureaucracy; no single program or source of expertise readily accessible to
other government agencies or the general public, with a potential loss of research
and data for these children; scattered programs that compete for attention, re-
sources, expertise, and authority; unjustifiable duplication and overlapping efforts;
and muddled messages floating down to state programs that receive federal health
dollars for this population.* Without a federal focus that acknowledges and supports
children with special health care needs, families will continue their frustrating dia-
logues about policy, data, definitions, services, and resources with federal agencies
and bureaus that cannot respond appropriately. The bottom line for families is sim-
ple: Families want coordinated federal policies that will support them in their efforts
to raise their children with special health care needs at home with the help of pro-
fessionals and friends and neighbors in their communities.
Basic Issues:
1. We must develop a federal policy, based on a philosophy of care, that will even-
tually include all persons, of all ages, who have disabilities and chronic health
conditions. That philosophy should emphasize decentralization of responsibil-
ity to family and community. But let us begin with a developmental approach,
with children.
2. The primary purpose of any comprehensive system of services for children with
disabilities or chronic health conditions should be to support and supplement
what families are doing for their children. While this may seem obvious, moving
the family to the center of the system would be revolutionary: the opposite of
policies that guide Medicaid, for example.
3. The system should serve all children with special health care needs. The vast
majority of children with special health care needs will need very little beyond
what their families, health practitioners, and teachers are already providing,
but the services and programs now available should continue to be protected
and provided, with coordination between public and private providers a critical
element. At present, we offer a great many services to a small percentage of
children with special needs, and do nothing systematic for the majority. It
should be noted that the services to these children are inconsistent, varying
greatly by state, diagnosis, eligibility criteria, and availability of providers
1
4. The system should keep most of the responsibility for paying for care for chil-
dren with special health care needs where it is now: with the private sector,
families, and communities. Many government planners' view of systems of
services for children with special health care needs is skewed: they focus only
on children and families who need lots of expensive services paid for by state
or federal funds. Most costs for most children, however, are paid by other
sources, such as private health insurance, families, and local schools. Nothing
should be done to displace these payers. On the other hand, families who need
financial assistance should receive it promptly and without excessive hassle.
Policies should clearly delineate who will pay for what, why, and how.
5. Children with special health care needs must be served as early in life as pos-
sible. During the transition to a comprehensive system, priority should be given
to reaching young children, without reducing services for those youngsters al-
ready being served. One group of children, adolescents who must at some point
move into adult systems of care, tend to be ignored at all levels and in most
programs.
6. We must gather better data about all children with special health care needs,
including information about children with mental illness, behavioral problems,
and learning disabilities. Once we know who these children are, we must de-
cide who will be served, in what ways, and what outcomes we should expect.
Outcome-based research can support the identification of effective practices.
And then a major effort must be made to disseminate those practices.
7. Improved coordination between schools, health providers, and families can
lead to better integration of children with disabilities or chronic health condi-
tions into every aspect of ordinary life. Government policy should support and
encourage the formation of parent-professional teams, and encourage all ap-
propriate agencies to work together to assist the family to raise their child.
How to Address the Basic Issues:
1. A broad based group of stakeholders/planners should come together to de-
velop, review, or refine models for a comprehensive system of care for children
with disabilities or chronic health conditions. They must agree to base their
thinking on a family-centered philosophy of care and to participate in a con-
sensus model of decision-making.
2. That group will need expert assistance to overcome conventional thinking
about systems of care for children with special health care needs, such as: that
services must be provided by government; that the institution is the norm; that
all kids with disabilities are severely disabled; that only highly trained profes-
sionals can provide services; etc.
3. The group should agree on a common definition of children with special health
care needs, leading to agreement on how many there are, where they are, what
services they require, what those services cost, and who should pay for them.
2
As mentioned earlier, this will require assembling much better information
about all children with special health care needs, including those with mental
illness, behavioral problems, and learning disabilities.
4. The group should focus on outcomes at critically important milestones during
childhood: What do we want for infants with or at risk for special health care
needs and their families? What do our children need as they enter school?
When they leave school as adults, what skills should they have? Given agree-
ment on these issues, and stripped of conventional thinking, we can then begin
to construct and understand coordinated, comprehensive, community-based,
family-centered models likely to produce the desired outcomes.
5. As the outlines of the models emerge, an effort should be made to identify
communities where the models are already in operation. Theoretical models
should be modified by actual experience before costs are determined.
6. Costs of the models should then be determined.
7. If the cost is not reasonable, the model should be further modified or dis-
carded. The group's work should not be considered done until one or more
models have been found that yield the desired outcomes at a reasonable cost.
8. This is a reinventing, not a restructuring, effort. Relatively little time should be
invested in figuring out how to make the children's SSI program more effective,
or on how to integrate Medicaid and school services. The point is to start with
the child, his or her family, the professionals that serve them, and others in
their community, and build from there. Starting with existing agencies and
programs almost guarantees getting stuck in conventional thinking.
9. Let us repeat: This will require a meeting of stakeholders, with an equal mix of
policymakers, families, agency people, providers, and advocates at the federal
level. The meeting must be well-designed, well-led, and substantive, sweeping
everyone out of their conventional boxes and assuring them that there will be
not only long-term vision, but practical outcomes that all stakeholders can use
and implement immediately.
Note: We acknowledge that there are several strong federal offices fighting for
and guiding programs and policies for children with special health care needs.
The most veteran office is the Division for Children with Special Health Care
Needs (DCSHCN) in the Maternal and Child Health Bureau (MCHB), which has
the longest and most specific legislated mandate to serve children with special
health care needs. However, we understand that MCHB is undergoing internal
structural changes which will have an unknown and perhaps questionable im-
pact on the DCSHCN and its history of protecting our children.
Polly Arango -8/8/96
Family Voices: system ideas 2
7/25/96
3
Nora-higher levelTAG?
12/20/96
Jan25 + again
in March FamV
Beekett-eroding - private high care ins.
chthatgoes wrong?
Arango- pre ICNA
what's gd about div
cenelusion in VI integration
JB- became part of system
- no data hunt in heR
Connie ? FICC
Joan ?
-MA Tags
Bob
who is inchg?
Agree it's aproblem. FA
Acknowl.that Hits is a place
JB: family -Ctrd - vs, familyfocused
that 13 not always
PA: Model- fame lies tp + ofer
McPh- "lo cate + treat complexch "1935
Koop again- tech-dep.
HOFA, + Div, ACF(ADD
PHS
1989 - Agendai new r He MCH
in Goal, 2000
ASPE chilace
Chi (4 clace Bur
Part H
VAP'S
Commonvision
Focal ptt critical, focus mass
FICC
Big. - MAISSI, IDEA plus HHS
Doug Lloyd - Q -what makes idwic?
- state moving
Head start gd model
Bobw - sitr engths, mustbuild on; when culture 7 HHS, not OSERS
Nora - TAG W/ACF + HCFA * higher level TAB
Ann - Dom Vidence - Steening Comm
- Xidiscovered gap in training
Julie - families there
FAMILY
VOICES
Board of Directors
Betsy Anderson
Massachusetts
Allan Bergman
District of Columbia
Kathleen Kirk Bishop
To:
Diana Fortuna
Vermont
Gayle Brown
From:
Polly Arango
DA
Kentucky
Connie Garner
About:
Virginia
Children with special health care needs
Pat Hackett-Waters
Florida
Date:
August 8, 1996
Denny Hoyt
Iowa
Vince Hutchins, MD
Maryland
Gail Johnson
Here is the paper I promised you so long ago. It is based on the thoughts I shared
Maryland
with you in written and verbal form in June. What took so long? Family Voices feels
Lou Landry
Idaho
quite a responsibility for speaking on behalf of so many children and families. I
Bev McConnell
shared my written thoughts, therefore, with several people, primarily the Family
Michigan
Voices staff, all of whom have different perspectives and experiences than I. They
John Reiss
Florida
helped me make some changes to the body, and then I wrote a problem statement.
Josie Woll
There are so many changes facing our children and families welfare reform/SSI,
Hawaii
Kennedy-Kassebaum, Title V/Children with Special Health Care Needs state
Staff
program modifications, Medicaid cuts, omnipresent managed care. Now is the
Polly Arango
New Mexico
perfect opportunity to get a handle on responsibility and coordination in the federal
Julianne Beckett
programs meant to serve them.
Iowa
Trish Thomas
New Mexico
I hope this is helpful. Julie Beckett and I will be in Washington on August 20-21
Nora Wells
for a number of meetings and we would be happy to meet with you at your
Massachusetts
convenience, Several families will meet with MCHB's Dr. Audrey Nora at 9:00 a.m.
Regional Coordinators
on August 21, to talk about our concerns about the changing focus on children with
Cindy Arceneaux
Southeast
special health care needs within the bureau. These are interesting times!
Ericka Cade
Central
Thanks for your interest in our children and their future.
Bob Craig
Atlantic
Cassie Johnston
West
Sally Maxey
Mountains
Heather Bennett McCabe
Mid-Atlantic
Barbara Popper
Northeast
Ceci Shapland
Northern Plains
Bill Stumpf
Central Plains
Trish Thomas
Southwest
A National Grassroots Network of Families and Friends Speaking on Behalf of Children with Special Health Care Needs
P.O. Box 769, Algodones, New Mexico 87001 / Tel 505/867-2368 / Fax 505/867-6517
NOV-12-1996 14:05
FAMILY VOICES
505 867 6517
P.02
FAMILY
OICES
To:
Diana Fortuna
From:
Polly Arango
Board of Directors
Betsy Anderson
About:
Meeting about children with special health care needs
Massachusetts
Allan Bergman
District of Columbia
Date:
November 13, 1996
Kathleen Kirk Bishop
Vermont
Gayle Brown
Kentucky
Just a note to make sure I am clear about the meeting in December regarding a
Connie Garner
Virginia
federal focus for children with disabilities and chronic health conditions (children
Pat Hackett-Waters
Florida
with special health care needs). The purpose would be to bring all the federal players
Denny Hoyt
together with two family leaders (Beckett and Arango) to discuss the problem we
lowa
have when health policy for children with special needs does not have appropriate
Vince Hutchins, MD
Maryland
placement within the federal government. This would be a one day meeting to state
Gail Johnson
and understand the problem and perhaps consider some solutions. The ripple effects
Maryland
lou Landry
of this issue have impacts on these children and their families that range from federal
Idaho
and state policy and allocation of resources to managed care, education, parental
Bev McConnell
Michigan
employment. even media coverage.
John Reiss
Florida
Those attending will likely include you, Bob Williams, Judy Heumann, Phil Lee,
Josie Woll
Ciro Sumaya, Merle McPherson, Ann Rosewater, Connie Garner, Joan Lombardi,
Howall
Carol Williams. These are the dates when Julie and I absolutely cannot be there:
Staff
December 3,4,6,9 (am and early pm OK), 13. Sorry but those are all speaking
Polly Arango
New Mexico
engagements for one or both of us.
Julianne Beckett
Iowa
Also, you mentioned a later, larger meeting on this topic that would include
Trish Thomas
New Mexico
foundations. Steve Somers of The Robert Wood Johnson Foundation recently hosted
Nora Wells
a meeting of eight foundations to discuss consumer involvement in health care (or
Massachusetts
maybe just managed care). I know that representatives from Casey, Packard, Kaiser
Regional Coordinators
were there ---perhaps Pew. You might want to call Steve at 609/279-0700 to see who
Cindy Arceneaux
Southeast
else attended and if they indicated an interest in children's health issues.
Ericka Cade
Central
One last thing. We are busy trying to find a marked-moderate SSI case not an
Bob Craig
Atlantic
easy task. In making inquiries, I realized another impact of new SSI regulations: The
Cassie Johnston
SSI eligibility definition is frequently used for eligibility for many, many programs
West
beyond SSI. For example, in the absence of a better definition, Hawaii is planning to
Sally Maxey
Mountains
use the new SSI eligibility criteria to determine which infants with special needs get
Heather Bennett McCabe
medical coverage through the carve out in managed care!
Mid-Atlantic
Barbara Popper
Northeast
Hope to see you soon. Thanks for your time and concern
Ceci Shapland
Northern Plains
Bill Stumpf
Central Plains
Trish Thomas
Southwest
A National Grassroots Network of Families and Friends Speaking on Behalf of Children with Special Health Care Needs
P.O. Box 769, Algodones, New Mexico 87001 / Tel 505/867-2368 / Fax 505/867-6517
Merle MeP-,concem-sptfor culture
activt focus
MCH Bureau andrey Nora
HRSA Dr. Dr. Samayo (he)
PHS
AUG-07-1996 15:39
FAMILY VOICES
505 867 6517
P.01
Key arjel
To: Diana Fortuna
FYI.
From: Polly Arango and Julie Beckett
Coyne, Chesser,
Date: August 7. 1996
Subject:
Family Voices is in contact with a number of organizations interested in ensuring
that the changes in the children's SSI program are carried out as smoothly as
possible, and that. when the process Is finished. all children who need services
continue to receive the services they need.
In brief, the approach being discussed is:
Negotiations with the Social Security Administration (SSA) to assist them to
develop a program for reviewing children's eligibility that will work for both SSA
and families.
A massive outreach effort to ensure that families who receive an SSA notice
understand the situation they face and the steps that they could take prior to
their meeting with SSA staff. We have discussed involving a substantial number
of AmeriCorps Volunteers in this effort.
A group of trained physicians and mental health professionals in each state to
consult with the families' treating physicians on documentation issues. Several
national medical groups have expressed an interest in participating in this part
of the effort.
Support to families, particularly between the time the letter is received and the
first meeting with SSA, provided by thousands of local parent support
organizations.
A very large group of volunteer attorneys (100,000 or more) willing to file an
appeal for any child found ineligible on the basis of the existing file and/or any
new documentation submitted. The attorneys will take each child as far as the
CLASP
new law permits with the understanding that some children, unfortunately. will
be found ineligible.
infalking phase
A second, much smaller group of physicians and attorneys that will work with
each state to ensure that the state is prepared to serve, and in fact serves, any
child found ineligible for SSI but still in need of services.
The intent is not to challenge the changes, but to ensure that a) families
understand and are prepared for whatever may happen when their child's eligibility is
reviewed: b) as many children as possible-ideally. all children-are able to avail
themselves of their right to a hearing before being dropped from the program: and c)
in the end. all children who need services continue to receive them. Further, the
intent is to carry out this effort at the community level. using, whenever possible,
community-based organizations and volunteers.
We'd be happy to provide more information on this effort at your convenience.
8/21/96
SSI - wkg w/Acad Peds - does who work W/CWD
- P+A's
Bruce
Peter
1st Oct wX of
ADD Nora t MoPherson(s) Samaya)
* HHS/advoc mtg w: ?? justkids?all?
*Dr Nork - call re systems
mid Sept.
& Wha@SA - call Indy
to see y she has started
Dr Nora - MCHB- long mtg
SSA mtg w/ FV
Reorg- pull out PedAIDS
Nachri
- systems dev, - more itent
ACCH
-bring gps togiDe
Rhoda
-Wash: mgd care
Block grant that works
Families @ public health
Marty
SAMHSA? HRSA?
To do - does
-legal assistance
*2/28-3/2
- non -Dr aps
Instrute fn child Heth Policy Eebley-got SSA grant
Who @ HHS Krow: Bobw
Ruth K