FAMILIES ARE THE REASON


NARRATOR:
In 1935, congress passed the Social Security Act--a law to bring some security into the 
lives of America's most vulnerable citizens. The fifth article of that act, known as Title V, 
provided for health care programs for mothers and children, including services for 
children with disabilities. Four years later, Title V expanded to include children with 
specific chronic illnesses. In these early years, children with special health needs often 
lived their entire lives in institutions.

JULIA PLOTNIK, R.N., REAR ADMIRAL-RETIRED: 
The doctors wrote the orders, the kid was institutionalized. Families came to visit, on 
occasion, but really the child was given up. Didn't belong to the family anymore. Their 
financial and physical responsibilities were done once they agreed to it. So there wasn't, 
certainly wasn't collaboration with families. They weren't even part of the equation.
 
 ED MCCAUL, ED.D, FORMER TEACHER: 
You know, I think back to the days of working in an institution, and that was a world 
unto itself. The institution was the school, it was the home.  In many ways, too, the 
staff, we were the family. It's very, very tough for a parent to make that, and very tough 
to have any kind of collaborative relationship with the institution. I mean not from lack of 
trying on their part, or even necessarily lack of trying on the part of the people working 
there, but just the dynamics made it very, very tough.

 MARIA GIANCATERINO, ADULT WITH DISABILITY: 
And I really think we got the short end of the stick, cause we had no say so, we had no 
transportation, nothing that we were included in. We were like, they threw us in a 
closet, and said forget about us.  l went to a handicapped school.  I went to 
handicapped camp, and when I did go to public school, I basically more or less freaked 
out.  But I wasn't used to being around kids that walked, and it was like I was scared, I 
didn't want to go.

 NARRATOR:
 In 1987, Surgeon General C. Everett Koop led the child health communities effort to 
develop a common vision of family-centered, community-based, comprehensive, 
coordinated, culturally competent systems of services. Over time, through family and 
professional partnerships, the vision of community-based care is becoming a reality.

DR. MERLE MCPHERSON, CHIEF, MCHB, SERVICES FOR CSHN: 
Those of us involved with Title V's program for children with special health care needs 
have learned many lessons over the years. We have learned over and over that a 
coordinated system of services, although difficult to accomplish, is absolutely essential 
in assisting children and families achieve their full potential. These systems exist now, 
because of partnerships between state and federal Title V programs, communities, and 
families. But these are delicate relationships that require careful attention and 
commitment. Meanwhile, things are changing in health care delivery. A trend towards 
decentralization and managed care arrangements raise great anxiety to the families of 
children with special health care needs who need that special care.

FRED GREEN, PARENT: 
My main concerns with him are, health apparatus he might need, you know like 
bilaterals for his tendons--to stretch his tendons. Just him receiving the services he 
should have, like diaper services, which has been cut under the new Medicaid formula. 
He needs things like rubber bed sheets, built-up spoons, and things like that to teach 
him how to eat, that he can get. No one ever told me he's eligible for these things 
through Medicaid. And I find that real bad, you know.

DR. MERLE MCPHERSON, CHIEF, MCHB, SERVICES FOR CSHN: 
Most of the managed care organizations have not had the opportunity to gain Title V's 
experience with family-centered, coordinated systems of care. So, it's up to us, families 
and professionals like you and me, to make sure that what we have learned gets 
communicated and becomes part of any change in that system of care. The work that 
began with the Social Security Act's Title V more than 60 years ago continues today as 
part of the US Department of Health and Human Services, HRSA, the Health 
Resources and Services Administration, through grants to the states, special projects 
and partnerships with agencies and communities.

NARRATOR:
The professional-family partnerships are growing. Families and professionals are 
working together as collaborative teams. And meanwhile, as both families and 
professionals move ahead on long-term goals, the day to day work goes on--the small 
triumphs-reaching for a toy, holding a toothbrush, learning a sign--all of the small things 
you do to make the lives of children with special needs as fulfilling as possible. Creating 
better futures for each child and each family.