Parents Helping Parents

Let me say right from the outset that we will participate; that we will do so to the best of our ability, recognising the hard work of others that has created our opportunity to do so; hard work that has fallen, we strongly suspect, on the shoulders of just one Council officer; wanting to support her as well as wanting to take hold of any opportunity open to us as parents that will help lay the path toward independent living for our 25-year old daughter; knowing that with all else, our age being not the least of it, never mind both being working parents, we ourselves need help to help her, and so will take this help; and knowing that she, to achieve independence, needs to look to other people than ourselves for the supports she needs.  So tonight, albeit a day late, we as her parents will complete the questionnaire, due back by today, that she, being able neither to read nor write, cannot - or we will complete it and send it in the morning, if tonight, while she is at a disco, we are not just too tired.  Or we cannot find all her financial information, needed in answer to the first questions; and, yes, we know that we should have these neatly filed away but I do not know about your life but our lives ceased to be "neatly filed" years ago; or perhaps we never managed to neatly file our lives anyway, as if managing another person's life as well as being her parents were not enough. But we'll try, tonight, to give filling in their questionnaire a try. Her Mum has just this minute found her Independent Living Fund financial details, which is a start. So please be in no doubt that we will do our best.

Having said that, we do not know why we are doing this, this "Planning Live" (at the link, look down the page); except it's "the only game in town" that might, perhaps and in the end, lead to our daughter finally being able to live in a place of her own. After the first of the "Planning Live" sessions, with two more to come, our daughter told the carers who came to help her to bed that she was going to live with her friend K.  We three together share that goal. We do not know if those who plan and organise the meetings share the same goal. In other words, we do not know if what they want from the "Planning Live" events is the same as what we want.  They are testing a process for certain; for certain we are willing guinea pigs (we will try to be the best guinea pigs we can, so do not read into my comments, reluctance or criticism), so to that extent, their purpose is different; indeed, to test the process, it might be said, is their primary purpose and, as a result, if it is successful, to implement the process across the city, for others; if not, well, back to the drawing board, to see what can be improved in the process and how. In a sense, as with all experiments (tests, trials, pilots) 'failure' is a sort of success. For us, for us as parents and for our daughter, failure is just that, failure. Because for us, success is her moving into a place of her own or, at least, taking a significant step towards that thanks to being involved in "Planning Live", whereas success for those managing the event is what comes next in terms of process. No doubt, for instance, for the consultancy who developed Planning Live, the adoption of the "Planning Live" package for others, and therefore further profitable business, will be a success. And do not think I am one of those who regard profit or enterprise as somehow ignoble, to be sneered at. It is simply their goal, as a business, or one of their goals, but not our goal, as a family, that is all.

And so we play by their rules; They being the City Council and the Consultancy: what is to be, and when, and where, and how we are to relate to the events, and what the questions are and who decided what the questions should be. Who decided. That seems to me the significant difference. Who decides whose questions get answered. In "Rosencrantz and Gildernstern Are Dead" by Tom Stoppard, the one raises with the other - it does not matter which, they are as indistinguishable in Stoppard as in Shakespeare - whether, on their journey to Elsinore, and thence to England to their fated death, they could have said 'No', could have refused the King's invitation, knowing that the journey, for them, could have no good end.  They are just 'bit part players' in someone else's play. Someone else's play. Some other's rules - or "others' rules" if you enjoy the distinction of the apostrophe.  Just so, are we: 'bit part players' in a drama of someone else's devising, making our way to our goal, hoping, unlike what befell R & G, for a happy ending.  So we join in with a City Council imperative, laid on it by Government policy, to move towards a system of individual budgets - to be distinguished from "personal budgets", getting right the language is vital; join in with a Consultancy that has a pre-devised package to deliver in a pre-devised way, asking pre-devised questions that have been tested out on previous participants; that requires our attendance at a certain place, on a certain date, at a certain time (and I would say thank-you for a very tasty lunch) - their rules, a drama scripted by them. The pinnacle of the English public services, of public service in England - and maybe the UK and Northern Ireland - as it developed in the nineteenth and twentieth centuries was one of service based on paternalism, which is to say, to use a derisive twenty-first century phrase that fails to recognise the achievement, "Nanny knows best".

How can it be otherwise? Can you imagine a system of public service that begins with "How can I help you?" and continues through such practical questions as When? and Where? and How? and - crucially - by By Whom?

Actually, you do not need to stress your imagination. In California they do do things differently. Let's first go to Santa Clara, to "Parents Helping Parents" (Parents helping parents - there's novelty). For PHP the focus, the locus, the fulcrum is the parent. "Parents Helping Parents (PHP) provides lifetime guidance, supports and services to families of children with any special need and the professionals who serve them."  Take a look at their video, but before you do, let me just say to look out for the Mum who says of PHP: "They asked how they could help." Really that's all you need to know, to know that PHP is different, sees things differently, works differently, from anything we have here in Sheffield and, probably, where you live too. Take a look.

I'd like you to read a little more about PHP in Santa Clara, to see what a different public services delivery model it is part of:

"As a parent-directed, community-based organization, PHP's mission was developed in response to the need in our community for information, training, and support services for families who have children with special needs and the professionals who serve them.

PHP receives federal funding as a Parent Training and Information Center that serves families of children and young adults from birth to age 22 with all disabilities: physical, cognitive, emotional, and learning. Our Education Program Specialists help families obtain appropriate education and services for their children with disabilities; work to improve education results for all children; train and inform parents and professionals on a variety of topics; resolve problems between families and schools or other agencies; and connect children with disabilities to community resources that address their needs. 

Additionally, PHP is a Family Empowerment Center (FEC) that provides information, resources, technical assistance, and systems change advocacy for a statewide network of local FEC's who provide family education, empowerment, and parent-professional collaborative activities for families of children with disabilities ages 3-22 years old.

PHP is also the Family Resource Center for Santa Clara County's Early Start Program. Families of infants and toddlers, birth to 36 months at risk of or with developmental delays and disabilities, can receive parent-to-parent support from Early Start Family Resource Centers and Networks. Family Resource Centers/Networks (FRC/Ns) actively collaborate with local regional centers and education agencies and help many parents, families and children access information about early intervention services. A listing of the Family Resource Centers is included in the Central Directory of Early Intervention Resources (PDF)."

Now let's go to San Andreas, to the Regional Center: "San Andreas Regional Center is a community-based, private nonprofit corporation that is funded by the State of California to serve people with developmental disabilities as required by the Lanterman Developmental Disabilities Act. The Lanterman Act is part of California law that sets out the rights and responsibilities of persons with developmental disabilities. San Andreas is one of 21 Regional Centers throughout California serving individuals and their families who reside within Monterey, San Benito, Santa Clara, and Santa Cruz Counties". 

And the Lanterman Act?  Section 4620 of the Lanterman Act states "The Legislature finds that the services provided to individuals and their families by regional centers is of such a special and unique nature that it cannot be satisfactorily provided by state agencies. Therefore, private nonprofit community agencies shall be utilized by the state for the purpose of operating regional centers."

Let's hear that again: ".... services .... of such a special and unique nature .....  cannot be satisfactorily provided by state agencies .... ". 

In short, in California, the State funds the non-profit Regional Centers which fund  non-profit organisations like Parents Helping Parents.  And the result? As the Mum in the video says: "They asked how they could help.

When, above, a moment ago, I invited you to imagine a different system, one that began with the question, "How can I help you?", did you think I was simply being absurd?

Comments

[Jacqui]

Thank you. What a great idea.

It's funny as I've always looked at your system as being more favourable then ours and yet, it still has many problems.