Chapter 7: Federal Mandate for Early Intervention, ARC Becomes ACHIEVA

09:14:42:00 - 09:19:10:20

Lisa: Many children have been diverted from institutions since 1972 by virtue of the Right to Education Act that the Pennsylvania ARC fought for and won but children with significant needs, medical needs particularly, could still be sent to nursing homes and other facilities for support and care. I know that changed dramatically in 1986 when there was a mandate, a federal mandate, for early intervention services and I'm wondering how that mandate changed the scope of your work at the ARC.

Marsha: Well ACHIEVA had for many, many years provided integrated pre-school settings and long before they were mandated by the government we knew that those formative years were important years so for a long time we were privately funding what are now called Early Intervention services. We had therapists, developmental therapists, speech therapists, occupational and physical therapists available for families. Remember, we could do some of this through insurance though even that was pretty minimal back in that day. Families have now an opportunity from so early on. We just had a four week old in our office last week. A little one with Down syndrome, and I have to tell you [on] the worst of my days, what I do is stroll back to Early Intervention to talk with families and to see these remarkable therapists. I mean they might have a six, seven week old down on a mat with two therapists playing the baby. It looks like they're playing with the baby and within thirty, forty minutes they're able to sit down with the family and immediately tell the family where they think that little one is in terms on developmental norm for that age. Early intervention has been a godsend to families. We at ACHIEVA provide early intervention supports in either ten or eleven counties, and we see well over 1200 little ones each year; that's birth to three, and I have to tell you. As much as the importance of the work with these babies and toddlers, it's also having the opportunity to work with their families. I would say many, not most, but many families upon the birth of a child with a known developmental disability, they actually go through a process of mourning. The shattering of the dream of having that perfect child who is going to become the president of the United States, you know, but to have professionals who can take families through the process. As I expect you know it's often times harder for dads to get to that point of acceptance than it is moms. Grandparents, I mean you deal with a constellation of issues and I just so, so admired the therapists and social workers who are working with a young families and also imparting on them, in them, from that early, early stage; you as parents are going to have a real life to live. Your child is going to have a real life to live. We're able to instill thoughts about inclusive practices. We of course have always had educational advocates who will work with families during the transitions who attend IEP meetings with families and that whole educational experience including now the hottest button, the transition of young people from school into community supports is something that we're working very, very, very hard with school districts throughout south and western Pennsylvania to get better at those transitional years.

09:19:11:15 - 09:22:24:10

Lisa: Marsha you had mentioned when I said ARC you had mentioned ACHIEVA. I'm wondering when you can tell me when ARC Allegheny became ACHIEVA and what that...

Marsha: It's about ten years ago and we are, and always will be, affiliated with the ARC of Pennsylvania and the ARC of the United States. It gives us our sense of values, the way that we approach everything that we do in terms of supports. But increasingly ACHIEVA was being asked by individuals and families to provide supports to children and adults other than those with intellectual disabilities particularly in early intervention. We, of course, providing supports to babies with low birth weight, little ones with Spine bifida, Down syndrome, Cerebral Palsy, and the ARC has always been affiliated with primarily people with Intellectual Disabilities. On the other end of the spectrum ACHIEVA operates a large and rapidly growing trust for individuals with disabilities and today we have over 2,000 individuals who have discreet trusts with ACHIEVA. We're managing, oh, somewhere around 75 million dollars in behalf of those individuals in meeting their needs by way of simple explanation, a properly constructed trust by not for profit allows individuals and families to place private funding into the trusts and the federal government guarantees that those funds, those private funds, will not be counted as an asset for the individual that would otherwise disqualify for primarily their Medicaid benefits; for their long term supports. So we were one of the first organizations in the country to get through the social security administrations, the centers for Medicare and Medicaid services. We were actually the first non-bank institution in Pennsylvania to be authorizes to operate a trust and the trust is open to individuals of all types of disabilities. So we decided that we wanted to be available to the broader group of people with disabilities and since the name ARC was quite established as the place to go if you were an individual or family member with an intellectual disability that we actually renamed the parent... this is all structurally complicated but ACHIEVA became the parent organization, but we do have three county ARCs as subsidiary as the parent; the ARC of Beaver County, the ARC of Westmoreland County, and the ARC of Allegheny County or Greater Pittsburgh.

09:22:24:17 - 09:23:11:05

Lisa: Thank you. Marsha you had mentioned the Family Trust which is so exciting. As you said you are one of the first in the country to pursue such a thing. ACHIEVA has a reputation for innovation in lots of areas, not just the Family Trust. Family support is certainly an area where ACHIEVA has been particularly innovative.

Marsha: We were the pilot, actually, for under Doctor Jennifer Howse, when she was the deputy secretary. She choose ACHIEVA to pilot our first initiative for family support funding through which family, very minimal amounts of money, through which families could make their own determination of how they would like to use finds in support of their son or daughter.

09:23:13:00 - 09:24:55:07

Lisa: What kind of an impact have you seen that level of support make for families, have on families?

Marsha: Family support itself funded by the state and minimally by the county is not really the primary support now. Families find large have gravitated to what we call the person in family directive waiver and that's a capped waiver through which the federal government provides just over fifty percent of the funding and families do have still, actually... less given our less waiver amendment but a fair amount of digression on how they want to use these capped funds, which are capped now about 30,000 dollars a tear and so families could decide with their self-advocate would you rather have your job coach available to you three days a week or would you rather go on a trip or have respite so that mom and dad get out of your hair now and then. So families have a fair amount of digression although I will say the Department, in my view, has through service definitions tied the families' hands more than I certainly would have if I were in that position. I would give a lot more digression. My belief is individuals and families know what they need. They know what they want and are in the best position to make determinations on what I would love to see be a broad, broad, broad menu of choices.

09:24:57:00 - 09:29:12:00

Lisa: Marsha you mentioned just a few moments ago that in the sort of support council advice that ACHIEVA gives to families, you certainly talk to families whose sons and daughters are graduating high school into what will come next. Workshops are still in many ways for many families the only option- employment option- for their sons and daughters. Is that true or is that someplace...

Marsha: I don't think it's really the only option. You see and, in fact ,I was just early this week in Washington DC and spent some time with Senator Tom Harkin who of course has taken this issue on as strongly... I'm just heart sick to know he's going to retire but Pennsylvania is and has been for many, many years been an employment first state. That's to say it was declared Gubernatorially. I think it has a lot to do with the incentives. It does have a lot to do with the ages of individuals. The workshops that I see now you do have individuals in their 70s, when most average Joes might have retired. I have already spoken with Fred Lokuta who is currently the Deputy Secretary [Pennsylvania Office of Developmental Disability Services]. I said, "Fred we are going to have to come up with a new service definition that categorizes for a certain number of people". I think it's a small number, something between the option now, which is essentially adult daycare and the workshop. I believe the workshops should close. I actually have a bet out there. We have the litigation now and which will result in a settlement agreement in Oregon to close sheltered workshops. We have Providence, Rhode Island which the Justice Department just busted for people making twenty-two cents an hour in workshops. But you also have, at the national level, a growing movement to do away with the provision that's ancient now from shortly after World War I that would allow people to be paid less than the minimum wage if they're working in a workshop. My bet is that, particularly in the Obama administration, we may have the minimum wage issue result which will virtually close workshops before things wind through litigation in the federal courts on the ADA issues that are in fault. So yeah, they are dinosaur. They are a thing of the past and I think that Pennsylvania and all other states are probably going for a minimal number of people, are probably going to have to come up with something that is better than an adult daycare center. I mean we shouldn't have fifty and sixty year olds cutting out pictures of Easter Bunnies at Easter time and Santa Clause at Christmas or Hanukah time. You know, younger people and families get it. Our workshops are still in by large an older group just as my parallel, in my mind, is just as we shut off children going into institutions through the Right to Education, I believe that we will shut off people going into sheltered workshops by providing employment opportunities and a really, really strong transition while young people are still in school. If we can introduce them with good job coaching through Department of Ed funding and some OVR involvement to good jobs that are suited to their interests they'll never want to go in there. That's the parallel in my mind at least. Shut it off at the pass.