Congratulations, Thomas!

Thomas was awarded a badge at work today for his 4 years of employment at Lowe’s Home Improvement!  He was so happy.  He loves his job, his co-workers, job coaches and customers.  We often run into his customers when we are out and about in the community doing other things and he gets so excited about seeing them!

 

 

Thomas was able to secure this job through the King County School 2 Work program.  They had a pilot program several years ago in which they worked with students that would have been considered the more “difficult to place” in community jobs.  I’m so glad to say that we were able to appeal to allow Thomas to participate in the program.  Thomas was also the only one in his group to have a job before they “graduated.”  While he still works for the same company, the job has changed as he has gained skills and they have discovered the great abilities he has which he has put to good use there.

Supported employment (or Community Integrated Employment – CIE) is one option that people with intellectual and developmental disabilities can choose to utilize if they want to try to work.  Supported employment is very individualized and may take many months to find a job that is the right fit for the person .   Job supports are also individualized – some people need 1:1 support throughout their working experience and others may just need a job coach to check in once a week to once a month.

Supported employment is ideal for Thomas.  He also lives in supported living so he has private transportation to and from work each morning for his hand-to-hand transfer from care-giving staff to job coach.  Given that Thomas also has medical treatments that he needs 3 x week, his care-giving staff then pick him up from work and take him to his doctor appointments.  This makes a full morning for Thomas – he’s ready for lunch by the time he gets back home.

Thomas does earn a bit above minimum wage in his job which is paid by his employer.  The funds for this are funneled from the Federal/State government through the county which pays the vendors for the job supports.  With Thomas typically working 7-9 hours a week, he works more hours than average for someone with his support needs.

While this is a great choice for Thomas, it is not for everyone.  We need to keep alternative choices and opportunities available for those with differing needs and skills.  For instance, there is group supported employment which many people prefer.  Often times the employees in these jobs may make less than minimum wage with a special certificate issues from the state (they are typically called 14 c certificates) Many people prefer these jobs since they are with their friends and enjoy the group experience too.

Our state has already abolished all pre-vocational types of jobs but in other states these may still be a choice.  We need to keep these alternative choices available for those who choose this type of job training.  We can’t talk about person centered planning and then remove choices.

I need to add that is it only due to the “village” that supports Thomas that he is able to be so successful in his achievements:  His village is his family and friends, Provail (employment vendor), Alpha Supported Living (supported living agency) in addition to his co-workers at Lowe’s.

 

 

Thank you, Alpha Supported Living

This past year has seen great changes for my son and this past Thanksgiving, I realized how much growth my son has made since last Thanksgiving.

Last year, our son, age 21, had lived at the Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID) for 5 years.  The ICF/ID was only 10 minutes from our family home and part of the community in which our son was born and raised.  We had frequent contact, outings and visits both at our home and his.  Unfortunately the team at the ICF/ID was unable to manage my son’s healthcare and daily support needs but we didn’t think we had another option.

I remember not only the great sense of relief I had when I took him back home after our Thanksgiving Dinner last year but also grief and sadness about his increased agitation and manic behavior which was so disruptive.  I questioned if we would be able to have him visit for future family holiday celebrations. He had been experiencing increasing mania and the physicians at the ICF/ID refused to follow the recommendations of our son’s psychiatrist regarding medications to control his mania.  I remember expressing my great concern regarding his increasing mania  to the psychiatrist during our meeting last December and feeling powerless in getting the needed medications prescribed and administered.

This Thanksgiving, our son was a totally different person.  He was at our family home for at least 4 hours and stayed focused and helpful.  His participation in meal prep and tasks was amazing.  He even sat at the table and ate a nice sized meal.  When it was time for me to take him back to his house, I realized that he had set a record for length of time at our house and that I was not totally exhausted and spent from trying to manage his mania, other disruptive behaviors and physical care.

I attribute these great changes to the move he made last spring from the ICF/ID to a supported living arrangement in a home with 2 housemates.  This was made possible by the Roads to Community Living Grant and Alpha Supported Living Agency in being able to provide these great services.  My son has greatly benefited in so many ways and in such a short time.

Within two months of moving and having his care provided by Alpha Supported Living, our son’s health issues were treated appropriately, medications and treatments administered as prescribed and other long standing health issues were addressed and managed.  It was great to see these changes and work with this team to create solutions that worked.   But the improvement and stabilization of my son’s health issues are just the beginning of the changes we have noticed.

Our son is learning new skills and is supported to increase his ability to make choices and take responsibility for various aspects of his daily life tasks.  He is now able to wash his hands, sit at the table and eat a whole meal, clean up his dishes, go grocery shopping for his own groceries, and is very compliant with taking his medications and other responsibilities such as ensuring his iPad is plugged in at night and putting his glasses on his dresser before going to bed. He is able to follow verbal prompts better and stay on task a few seconds longer.  He is becoming more self-directed in being able to communicate his needs and desires.

We are beyond proud of the accomplishments he has made this past year with the support from Alpha Supported Living.  Seeing first hand what a difference this care makes it is imperative for our states to support the wages of the caregivers.  We need continuity of care – both as the recipient of the care and as the caregiver – to continue to provide this care.

Some supported care agencies are experiencing staff turnover rates of 50-70%.  This is not only very disruptive to the clients but increases the overall cost of care when one looks at the cost of recruiting and training a revolving door of caregivers.  Once trained and placed in a job many direct care staff leave due to the intensity of the job and low pay. The state sets the pay rates and it is just not enough to cover costs of the direct care staff.

Supported living is in crisis.  Funding for direct care staff has been ignored for years while costs have continued to increase.  The level of intensity of staff support is increasing and we need to provide the appropriate staff.  This level of care is critical to many in our community to enable them to have a meaningful life experience.

A meaningful life is more than just having support staff in your home though.  It is being able to go out and be in the community.  Many agencies do not have funds to provide transportation or staff for outings, activities and medical appointments.  Many agencies are not able to hire a Registered Nurse to oversee healthcare or have a dedicated Healthcare Coordinator to manage the variety of healthcare needs. Again, the intensity of these needs are increasing.  We need to have providers trained in the particular needs of the population with intellectual and developmental disabilities. These aspects of care should not be “extras” but should be part of the service. But,  unless an agency is able to fund raise for these critical necessities  to a meaningful life, the clients will go without.

In my son’s situation, the transportation and healthcare are paramount to the success he is experiencing. .  My son has a job at Lowe’s working 2 hours each weekday morning  (supported employment provided by PROVAIL). and needs transportation to and from work .  He also has medical treatments at least 3 times a week for which he needs transportation and support at the treatment in addition to other medical appointments about once a week.  Without a dedicated vehicle for each home supported by Alpha Supported Living these necessary trips would be impossible.

It is only through fund raising that Alpha Supported Living is able to provide these life necessities to ensure not only the basics are provided but other opportunities to have a meaningful life – art classes, walking clubs, cooking groups, community outings are just a sampling of the other “extras” that help to provide quality experiences to one’s life.

Living in a home with supported living as opposed to in a state operated ICF/ID, is a collaborative effort.  We, as parents, guardians, residents, community members and staff, can make a real difference.  We can adapt to changes better and address issues directly when they arise.  There is more control over one’s life.  We can actually DO something to help make one’s live more meaningful – something that we generally cannot do for those who live in a state operated ICF/ID.

Below are some suggestions for what you can DO to help make someone’s life better:

  1.  Communicate this great need to our legislators – we need to meet minimum wage requirements and keep pace with the cost of living increases that we all experience.

2. Make a donation to a supported living agency to help provide for supports other than direct care staff wages.

Below is an example of how your donation helps to improve the quality of life of clients supported by Alpha Supported Living Services:

alpha-support-is-critical

(for clarification on the RN – this amount  has to do with the amount needed to bridge the gap between what Alpha is funded and what they provide. The professional services rates they receive from DDA provide for a part-time RN. The amount listed gets them to a full-time RN for 6 months)

If you would like to donate to Alpha Supported Living Services you can reach them at

Alpha Supported Living Services

MAIN OFFICE
16030 Juanita-Woodinville Way NE
Bothell, WA 98011

t 206 284 9130 | f 425 420 1133

 

Please join me in making a monthly donation to Alpha Supported Living Services – it WILL make a difference in someone’s life!

 

 

 

 

 

 

 

School to Work – Successful Supported Employment

King County Developmental Disabilities Division School to Work (S2W) program has been very successful in transitioning youth from school to jobs.  Students with more intensive support needs were not finding the same success – many were not referred to the S2W or if referred, often did not obtain an employment contractor to receive services. Therefore in all reality, these students with more intensive support needs were essentially excluded from the very successful S2W transition program.

I had inquired about participation for my son, Thomas, in years past.  One administrator from Developmental Disabilities Administration told me that my son would not be eligible since the program tended to “cherry pick” those students who they believed would be the most successful – a method used to show a higher percentage of employment.  I was also told that since my son did not live in “the community” he would not be eligible to enroll.

Luckily, with persistence and the development of a pilot program, King County together with several other agencies collaborated and initiated the High Support Needs S2W program in 2014.  Ten students participated and 7 of those had jobs within the first year, 5 of those were employed before they graduated from their school programs.

Thomas was a ground breaker in this program – being the first participant who lives in an Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID).  Not only was he the first participant but he was also one of the 5 who had a job prior to graduation.  He works 2 hours in the mornings (Monday through Friday) at Lowes in North Seattle.  He absolutely loves his job!  We hope that his success will lead others to have similar success stories.

This year KCDDD  celebrated their 10 year anniversary for the School to Work program. A video was made highlighting a few of these employees on their job sites.  Please do view the whole video as it is quite inspiring to see these young adults doing such great work.  Thomas’ section starts at 16:30 into the video.

In meeting with other families in focus groups at the end of the first year, it was generally agreed that the employment vendor and employee coach was the person who could make or break the success of the program.  Listening to the stories of how the employee coaches got to know the students and find jobs which utilized the students strengths and abilities was so inspirational and a huge thanks needs to go out to these dedicated providers.

Personally, we can not say enough wonderful things about those at Provail who have worked with Thomas.  It has been a blessing to work with the team and be involved in this life changing event for Thomas.  Having this job has greatly increased his quality of life and helped transition him from school to work and other life events involved in becoming a young adult.

S2W High Support Pilot –

Deinstitutionalization – Risks now outweigh Benefits

More horrible budget news today and I really don’t know what to say – how much more can we take?  People are already dying due to this crisis and the plan that Governor Gregoire put out today guarantees that more of our precious loved ones will die.

I am also continually shocked by the misinformation that our Governor is basing some of these disastrous decisions on.  Most notably is the false information that closing our Residential Habilitation Centers (RHCs) will save money.  The reality is that this will cost more money and more lives.  We have already experienced this in the process of closing Frances Haddon Morgan Center this year.

There has been one documented death so far.  There have been several injuries to residents and many of the residents who have transferred from Frances Haddon Morgan Center to Fircrest are experiencing difficulties.  It’s not only the residents who have transferred but the residents who were already living there are experiencing increased anxiety and behavior issues.

I cannot imagine what many people who are living in community homes must be feeling – fearing for their lives with no safety net there for support.

I have attached a chart which documents true costs of care in a variety of settings.  This data is taken from the DSHS EMIS report for December  2009 –  Dec 2010.  The data for the Supported Living Programs is taken from the Certified Residential Care Cost Reports that each agency must submit every year to DDD.  These are the 2010 reports.

Some very interesting data is clear:

The RHCs are THE MOST COST EFFECTIVE and COMPREHENSIVE care for some of our most vulnerable citizens.  This chart does not even include the cost of food, healthcare and most habilitation services for our citizens with disabilities.

Take a look and see – let me know if you have any questions.  Cost of Care Measure

Opinion published in The Stand Risks of Deinstitutionalization now outweigh benefits

It is also interesting to note the profits that many of these agencies make.  It would be great to use some of that money for improved services to more people.

My Son Cannot be Cured!

As a healthcare professional, parent, citizen and disability advocate, I still do not understand the position of DSHS, DDD and prominent “advocacy” groups such as The Arc Chapters, People First and others.  These groups seem to believe that if you keep spending money and services on people with disabilities, they will become normal, function as normal and be productive as normal.  For some people this may be true and for those people I am very supportive.

There is another side to the story though – there are many of our citizens with disabilities who will never be able to be on their own, have a job with a competitive wage, own a house, cook their own dinner, or drive a car.  And you know what – they probably don’t care and wouldn’t even consider those things as part of their life – and that’s OKAY!

My son is one of these citizens.  He’s not normal, will never be normal, has no desire to become normal (he doesn’t even know what that is anyhow) but this in no way diminishes his worth as a beloved human being.  He is absolutely perfect the way he is.

In addition to his incredible worth as a human being, my son is about the happiest person that you will ever meet – he finds joy in so many aspects of life and just thinking about what brings him joy, brings me and all who know him joy.

I believe that if someone wanted to spend the millions of dollars on him to try to train him for a “real job” or to try to make him feel like he’s part of the community; they are wasting everyone’s money and time.  Not only that, they would be irritating him since he is totally incapable of fitting into a “normal” type of life.  I’m tired of people telling me that “if only he had the right supports he could do normal things” – he’s perfectly content with what he can do and works at his pace learning new things that matter to him.  Why can’t society let him live his life rather than trying to make him fit a mold that is beyond his capacity to fit?

Also, as a health professional, parent, citizen and disability advocate, I would much rather see the public funds that are overspent on trying to get people to be normal, spent on more productive services – think of the good that could come to the whole society if these dollars were spent on education, health care, public services that benefit more people than just a few that will never be able to live up to the expectations of “normal?”

I do believe in disability advocacy but this movement has gone way too far in trying to overcompensate.  It’s time to swing back to sanity now and realize that there is a continuum of abilities and that we need to honor and cherish that.   We seem to accept everyone else for who they are, why can’t we accept those with profound disabilities for who they are too?


Is there a monopoly on disability advocacy?

I’m outraged at the inhumane treatment that our most vulnerable citizens are receiving at the hands of some advocacy agencies and departments that are set up to protect these very citizens.  Not only is this segment of this population that is being ignored, their advocates that can speak for them are being banished from public discussions and stakeholder meetings.

There is a very active grassroots advocacy movement which  supports our most vulnerable citizens.  These people are dedicated beyond imagination, energetic, creative and innovative.  They have come up with many alternatives that will not only save money but enable more people to be served.  They want to share resources and expertise but their hands are tied by the monopoly that runs disability advocacy.

There is so much senseless nonsense being passed off as fact, yet if anyone questions it or asks for clarification, you are shunned.

I got a note from an executive director today in response to a question I had as to why I couldn’t comment on the public site.

This is his response:

Anyone is free to submit an article for consideration.  Articles we publish must be consistent with the values of the DD Act, namely self-determination, productivity, independence and integration/inclusion in all facets of community life.

We decided to have this blog under some editorial supervision because there is a lot of mis-information in the DD community which would not be helpful.  We hope to provide/publish information people can trust.

My response to him:

That is exactly my concern about this blog.  I believe that it is very biased in favor of those who can be self-advocates but does not address the needs of those who are not able to function at that level.

Within the population of people with developmental disabilities, there is a wide continuum of abilities.  Many of these people are not able to be their own self-advocates and where do these people fit into the scheme of this?  Many are in the community, many live in RHCs, but they are still people and their voices need to be heard.

When articles are written only from the perspective of people who can be self-advocates and what they are able to do and accomplish (I fully support them by the way) it really hurts the people who are not able to.  Also the family members of these people are made to feel like they are not the best advocates for their loved ones, that some agency “knows” better than the family.

These are my concerns and I don’t see how they can be addressed with out allowing something to be written with regards to them.

I fully believe that many of these agencies are good and do much great work but I also know that most do not advocate for the needs of my son and others like him.

How can we break down these walls and have a real discussion rather than being banished just like they are banishing our loved ones?