You’ve Come a Long Way Baby

When I look back over the past 42 years I have been in this business I am amazed at how far we have come supporting individuals with developmental/intellectual disabilities.  In 1973, when I started, the Vocational Rehabilitation Act had just been signed into law and the Education for All Handicapped Children Act (PL 94-142) now known as IDEA (Individuals with Disabilities Education Act) was still two years away from being signed into law.  These two landmark pieces of legislation were major steps in  assuring the civil rights for persons with disabilities.  So why am I mentioning it now?  Well, we are on the eve of celebrating the Americans with Disabilities Act (ADA), which is the third leg in the disability civil rights law platform that grants rights to citizens with disabilities to be fully integrated and accepted members of our society, this July.  I remember with clarity working on the passage of this legislation 25 years ago and contemplating the limitless possibilities the ADA would create for individuals with disabilities.
 
While we have achieved some major milestones up to this point I would say we have a long way to go…baby.  I recently read a report put out by the ARC entitled - Still in the Shadows with Their Future Uncertain:  A Report on Family and Individual Needs for Disability Supports (FINDS), 2011.  Here is the link:http://www.thearc.org/document.doc?id=3672 

The report states “Despite gains in many areas, overall the results from the FINDS survey show that our efforts as a nation have fallen short of the vision of an America where people with intellectual and developmental disabilities (I/DD) are accepted and have the supports they need to live to their full potential in the community.”

The report was written in 2011 at a time when national and state supports for services were being cut due to the great recession and, as a result, it is a bit skewed emphasizing threats to the future.  But it does also point out short falls in education, employment, and supporting individuals/families  and that we have a long way to go to ensure I/DD individuals can live and work in our community.

The end of the article has a new call to action taken from President John F. Kennedy’s call for “us to shine the light on people who were living in the shadows” a reference to the forming of a President’s Panel to develop a plan of action in the field of intellectual and developmental disabilities (I/DD). “President Kennedy called on every American citizen to help bring them out of the shadows, [informed, no doubt, by his own sister’s condition].”

The article is well written and has some very tangible statements that need to be taken to heart.  I encourage you to read the report to gain a better understanding of this issue. 
 

 

President Kennedy calling on us to shine the light on

I/DD individuals living and working in the community

Advocacy is Critical

Advocacy is very critical for continuing to provide services for individuals with developmental disabilities in the community.  There has been quite a tug of war the last few years over services offered by the Developmental Disabilities Administration (DDA) over the types of “day services” individuals with disabilities need.

Basically we have advocated and the state has adopted a “work first” position for individuals with developmental disabilities in lieu of prevocational (sheltered work) or community access.  The law allows for those services once effort has been put forth attempting to find a job for someone and is unsuccessful within 9 months’ time.  This time can be extended by case managers if necessary.

Those advocating for pre vocational services argue that this type of service offers a full array of service choices.  At a recent Washington State Senate committee hearing Nikki Wegner, Morningside’s VP of Services and Chief Operating Officer testified at the committee in support of integrated work in the community verses sheltered employment.  The state DDA is moving forward with eliminating pre vocational services by 2019 which now support approximately 300 individuals.  This would allow sufficient time in my opinion to make a conversion to community employment.

Nikki summed up Morningside’s experience well in our closing our sheltered workshop in 2004.  Individuals with developmental disabilities can and should work in the community.  The communities where we offer services are indeed a better place because of this. 

 

I don’t need no stinkin' handout! Part III

It seems every year about this time my son, Andrew, becomes the subject of this blog.  Andrew is now 19 years old, a high school graduate, and he also happens to be a person with a disability – he is missing his left arm. 

Two years ago I wrote about helping Andrew prepare for his senior year and some of the things that lay ahead of him in the world of services for individuals with disabilities.  Step one was making application to the Division of Vocational Rehabilitation (DVR).   I described my experience telling him about this federally-funded program that assists individuals with disabilities in determining their career and then offering training and placement to make their vocational dream a reality.  At the time, his immediate response was that he was proud and didn’t need any handout.  I think his exact words were “I don’t need no stinkin’ handout”.  He was incredulous with the thought that throughout his whole life he had fought to not make his disability a way to gain advantage or favor and now his Dad was suggesting he take something for free.

By last year I was able to report he had accepted the services offered by DVR.  Andrew began to work with DVR and had positive experiences with his counselor going through an individual orientation.  I had also found a letter in our house from DVR indicating he was eligible for services and instructing Andrew to make an appointment again to begin writing the plan.  He was nonplussed about receiving the letter.  And anyway getting the letter and making the appointment would have to wait until after the prom which prom came first in his life! 

Well, finally Andrew has a DVR plan!  It has Andrew scheduled to attend SPSCC this spring.  This has been a long and frustrating experience as a parent.  It's important to encourage yet not be too pushy or too frustrated by his lack of initiative and follow-through - Yikes - an 8 month delay!   But now he is about to begin his schooling which will lead to the job he has always dreamed of - becoming a Chef.  We’ll see how it goes.  Oh, by the way, he also got a part-time job with assistance from Morningside!  [Paid for by, you guessed it, Dad!]       

                                               Me and Andrew having breakfast together

Unconditional Love

My clock radio at home is set to the local NPR station, KPLU, which means I awaken to a variety of stories.  I look forward with anticipation to each broadcast throughout the week.  Typically, I hear the national Morning Edition Monday through Friday with the addition of Northwest news with Kirsten Kendrick.  But Friday's broadcasts are special.  This is when StoryCorps is on.  StoryCorps broadcasts short podcasts taped by individuals telling their stories in an interview format.  Last Friday I was particularly touched by a podcast with a son, Sean Carter, interviewing his mother, Jenny.  Sean interviewed his mother using a speaker device because he is paralyzed as a result of an accident.  He interviewed her about the fact that she has been his caregiver since the accident.

In our line of business this is all too common and I have met hundreds of parents who are caregivers for their son or daughter n exactly the same situation as Sean and Jenny Carter.

I have tremendous admiration for parents and family members as they endure unbelievable circumstances while providing invaluable assistance to their son or daughter.  As I have come to know these parents and see firsthand the support they give, their unconditional love is evident in a variety of ways.  These families also need our support in whatever ways we can give it.  For example, we can advocate for family support dollars for respite services or ongoing care.  I am sure our support would be greatly appreciated. 

The link is provided below so you can listen to the Carter’s story.  As you listen please remember this story is played out in tens of thousands homes right here in in our community, our state, and across this country every day.   

Here is the link to NPR: http://www.npr.org/2015/02/06/384212826/caring-mom-is-picture-of-unconditional-love-injured-son-says

Group Supported Employment Program Ending

For those of you not familiar with Group Supported Employment (GSE), it is designed to provide services for a group of up to 8 individuals in an integrated (i.e. "normal") work setting.  An example of a GSE work site is a janitorial crew that cleans a state building.  This is as opposed to sheltered workshops which are segregated work environments and a practice we ended 10 years ago. 

I am taking this opportunity to provide the rationale for now ending our GSE program as well as the sub-minimum wage practice associated with it.  

First GSE work sites are not truly integrated.  At all the GSE sites we have operated our workers are set apart, as a team, working on the contract.  Integration is largely dependent upon the particular company contracting for the service.  In many cases the workers with disabilities don’t interact closely with other workers. 

Second people working in GSE can and should work in an individual job in the community as opposed to Morningside being the employer of record.  A particular level of disability or behavioral issues are not factors that exclude one from working in the community.  We have demonstrated this in scores of cases by placing clients in individual jobs who have more severe disabilities than those working in a group environment. 

So what constitutes the on-going need for this service?  A case could be made that this type of service may have some value as a temporary placement.  However, typically clients end up working for many years at a group site for a wide variety of reasons.  Included in those reasons is that parents and caregivers like the fact that the service is funded at 4 hours a day 5 days a week and individual employment can be fewer hours per week.  So it begs a difficult question:  Is this service designed for the individual or for the convenience of the residential providers or parent/relatives?

Those we serve in GSE are often not progressing by gaining skills and looking for new opportunities.  Recently a client who moved to a job in the community from a GSE site was very happy with the change so she could "meet new friends" and was very clear she didn't want to go back under any circumstances.  One parent said "Well, it’s about time. My son has been in this training program for years." 

The discussion about the future of this program is increasing in the state.  My feeling is that this service category will be eliminated in a few years in a manner similar to the way pre-voc or sheltered workshops were pressed to close a couple of years ago.

Finally, we are also not going to renew our sub-minimum wage certificate.  This is a special certificate issued by the US Department of Labor that allows paying less than minimum wage to individuals with disabilities.  [I wrote about how this law has been abused as highlighted by a US DOL case against a farm in Iowa a couple of years ago.]  The disability community has been advocating the elimination of this sub-minimum wage program and I agree with them!  My friend Joelle Brouner, a person with a disability, pointed out to the Morningside Board of Trustees last year that a person who has a disability isn’t given a break on buying goods or services.  So why should employers be able to pay less minimum wage?  We/I believe that everyone should earn at least the minimum wage regardless of disability status.  And most of the persons with significant disabilities working in the community produce at a high rate.  As my friend, and co-worker, Don Hayden says “We aren’t given many chances to work so when a company hires us we are loyal and want to do a good job, constantly proving our capability”.  

So what's next for GSE?  Those sites/contracts that can be transformed into an Affirmative Business Enterprise (ABE) will continue.  [An ABE is designed to make a profit and employ some individuals with a disability.]  Those sites/contracts that are not profitable will be closed.  We are also pursuing other business ventures that could employ some people with a disability in a job in the community.  Current GSE clients will be offered the opportunity to pursue individual employment in a job of their choosing. 

One again Morningside is charting territory not yet traveled by others.  We are the first organization to move in this direction just as we were when closing the sheltered workshop.  But we believe this change is in the best interest of those we serve.  Many eyes are on Morningside right now to see how this turns out.  I have every confidence the creative, professional Morningside staff will make this a great transition, which will offer more opportunities, for our clients.