Hard times Ahead

This week we found out that one of the last programs for people with disabilities is no longer open for new people. They call this program Section 29, it is a waiver program that allows state dollars and federal dollars to pay for services to people with disabilities. But mostly it was the last place parents and young people with disabilities could seek services upon graduating from High School. It is very difficult to understand these services. All through school special education services are mandated, the schools must provide for all students. But once a person reaches the age of 21 they become part of the "adult" services which are not an entitlement. It is such a shock for parents and young people.

Over the next year many changes will come and it will be critical to keep focused on supporting ALL people with developmental disabilities. I have no idea how the system will respond to the need and the lack of funding but parents and families will need lots of support. There is a lot of talk about restructuring and new models. I am most concerned that services are not only for the most serious cases but that those people for whom a little support could go a long way. Keep your eyes and ears open.

When good people struggle....

I would argue that it is easy to be intellectual, community focused and values driven when the people we support behave well. The real test of our work and OUR values come when people struggle, when they behave in ways that embarrass or frighten us...or those around them. During my tenure in this field I have spent most of my time with people who experience significant challenges generally labeled "behavioral". This past three years I have been able to work with folks who generally require little to no behavior management; no big interventions, no written plans to produce acceptable or safe living and with few exceptions are happy participants in almost all areas of daily life.

However recently a few folks have struggled mightily to find peace and happiness in their worlds. Medications have been adjusted, hospital stays have proven to be less than perfect, and daily life is filled with ups, downs, anger and fear. One woman has moved so far away from her stable and happy self that people are baffled as to how best to support her. Both women deserve better and have the capacity for better living. This is when our job becomes most important...how we reach out into their darkness and give support and encouragement will never matter more. Supporting success and peaceful living rather than fear and drama is critical and so very hard. These are the days that we prove our value in this business. I believe accepting and meeting both of these ladies where they are is step one...moving beside them to step two is the harder thing to do. I fully believe we can do this. We must.

Worry, worry...what will be next? Need community NOW!

I worry for the people we support. I look at how difficult the days ahead are and think to myself that now is the time..we need to be together, ALL of us. How can we help families of people with disabilities and how do we ensure that all those in need do not get left behind?

Not only do people with disabilities have to worry but other folks such as elderly are at serious risk. A case in point was today visiting with Seniors Plus and talking about the lack of care for elderly, particularly day supports. Many of these elderly are living with their children and during the day need assistance to be safe and to stay in their family home. There are no services and I wonder why? All of these folks worked hard their whole life, raised children and lived among us...but now they are looking at lives of loneliness and possible nursing home care simply b/c we cannot offer support to help them stay at home. Suddenly they are devalued. I wonder if there is a way to make a difference in their lives?

What will Families do? Dark Days Ahead.

I have wondered in the past months --what will families do? As the economy dives it is so hard to comprehend all the impact but families with a disabled member will most certainly feel this one. If there are no services available what will parents do when their child is out of high school. Most families do not fully appreciate that during the school years the state must provide services but after graduation it is optional.

Money is tight and options for families are getting less...waiting lists for services all over the country grow...so sad. Our folks are the one unique group who have absolutely no choice about their condition and it seems perhaps their future.

Laughter and Honesty

Good Heavens's my friend Greg made me laugh the other day. I was at his home, a group home, doing a quality review. He was in a great mood and did his usual banter and laughter.

He came over and told me that "this couch (he pointed to the living room couch) is not fit to sit on" and then he used some words that I will not repeat and reminded me that "you have all the money lady." Next we walked out into the laundry area where there are two floor to ceiling shelfing areas with curtains instead of doors...now I would venture a guess they are made of sheets. He said "Now this is GD stupid, what do we have these hanging here where there should be doors, this is just stupid and the look stupid". All of this is said with a heavy Maine accent and a bit of a smile...knowing he has my audience. But I knew that he was right...I would not want it in my house and it did look kind of weird.

Then Greg told me that his employer (a per Diem job he has had for years) might need him to work on a Monday...he currently does not attend TPC on Mondays (by his choice) and he said "Now I told them that I do not go to the Progress Center on Mondays BUT if THEY need me I will work". I said sure you dump us but are happy to go there on a Monday. He gave a big smile and said "you are rooting tooting right I will because it is fun there". We both laughed, I gave him a hard time for coming up with rooting tooting...but we both also knew he loves his "real job". While I got to laugh with him and we were able to joke about the silly stuff that happens in our world his honesty is rare and wonderful. Made me go home and think about how important it is to be REAL!

Do you have the Heart for this work?

I wonder why when we hire folks we forget to ask ...really ask: Do you have the heart for this work? We struggle daily at TPC with the daily lives of those we support being wasted.

We wonder why the staff, at times, do not seem to care if the folks they support sit and wait, wait and sit, do nothing and then more of nothing. We wonder why eight people go to the beach despite the fact that four of them have no interest in the beach. We wonder why five to seven people, who care about someone, can sit around a table once a year and make goals for that person that are feeble.

I believe it is because the work is hard, the days blend quickly and it gets easy to slush through them. I know that in the end the only thing that makes you really work hard at this is HEART. Do you carry an other's life with the respect and dignity it deserves. It is a gift and a burden that can bring great joy to you both, but the holding of life should never be taken lightly and if often heavy. There are a hundred things that can go wrong in a single day and one hundred more that can be right...focus on the right takes love and hope and a deep belief that this work is a calling to something better. Do we ask the right questions of those we hire?

Beware of the Quick Fix!

Recently there was an article about students and alternatives for special education costs. Two things struck me: One person noted: well they have been struggling with school consolidation so they decided to start with special education and secondly the kids that are really needing to be in the most restrictive and behavioral programs (residential)that cost the most would they fit this model? Not to mention that we will use a vacant "wing" to support them!

Then I thought of school busing. then I thought why our group of kids? Then I felt sad because it is a slippery slope. They make it sound good...the children will be closer to home but what is the criteria and whose kids will go and then what are we building??? I look for your thoughts and ask that we share this with parents if possible because I wonder about their thoughts. I believe the fight for the rights of children with special education is at our door step.

http://kennebecjournal.mainetoday.com/news/local/6868794.html