Category Archives: Respite

Movin’ for Money – Specialized Programs

Two great opportunities to support the Seattle Parks and

Recreation Specialized Programs

 

 

 

GiveBIG2013_color_date

Moving for money small

 

 

 

 

 

 

 

 

 

 

If you are unfamiliar with Specialized Programs, let me tell you that this is the best opportunity around for not only the participants but for the families too.  The staff is knowledgeable and specially trained, stable and returns year after year for the annual summer camps – both the day camp and overnight camp.  Even though this program is not funded and supported by the Division of Developmental Administration  it is the best respite for families and also very affordable.

It is affordable because the Advisory Council and others raise funds to support our programming.  It is critically important to us to keep the cost affordable for our participants and their families and we can only do this with your help. Please consider helping support these programs, many of which have waiting lists to get in or are full to capacity, by sending a tax-deductible donation for our annual Movin’ for Money event.

 

Movin for money photo

 

There is a variety of programming, both for youth and adults, which cover recreational, athletic, life skill building, social and community events.  The annual day camp at Woodland Park and the summer overnight camps at Camp Long are anticipated with enthusiasm every year.

Below are some places that the youth have gone to this year in the Saturday Activities program:

Outback Kangaroo Farm - Feed llama’s and roo’s – hold a baby Joey and see animals from down under.

Skagit Valley Tulip Festival – See the beautiful rainbow of tulips and ride a wagon through fields of rainbows.

Special Olympics Track Meet

Kelsey Creek Farm and Sheep Shearing – watch the interesting art of sheep getting a haircut.  Animal viewing and wagon rides.

Storybook Theatre – “Rapunzel”

Hike, Bike and Boat – explore the Sauk River Trail, learn from the Fern Fairy and the Hiker Dude, ride adaptive bikes.

M-Bar C Ranch – ferry ride to Whidbey Island and horseback riding with a BBQ lunch.

 Winter 2013 Catalog of Programs

Spring 2013 Catalog of Programs

Please help support our programs to enable as many people as possible to attend these great programs!

 

Our Families need RESPITE

Many, many families can be helped with just a little bit of stable, reliable respite.  Please support HB 1546

There are options that need to be looked at so that families can receive respite – it is not enough to just add hours without finding a way to provide that respite to families. Families who are already eligible for respite hours do not have enough providers.  We need to look at ways to improve the system to make respite accessible and reliable for families.

When respite providers make little more than a babysitter (this may not be true – a teenage babysitter may make more than a respite provider who is providing care to adults and children with challenging special needs) it’s no wonder that families cannot find or keep a provider.

What happens is families stay home to provide care for their child.  Typically, when your child develops and grows, when they are teenagers you are able to leave them alone for awhile.  Not so with our families.  We need to be there when our child comes home on the bus.  We need to be there all afternoon and evening.  Jobs are lost, opportunities for siblings are lost.  It’s not just watching them – it’s making sure they are toileted, making sure they have something to eat, making sure they are safe, making sure they have their medications and more.  It’s being attentive and involved in their care and well-being, keeping them active and engaged, interested in activities and helping them along the way, giving needed supports.

Without respite our families are becoming socially excluded – isolated from community.  This is not what the inclusion movement was intended to do but it has become the reality for many families.

One mother testified very frankly to the DD Service System Task Force on October 23, 2012.    You can hear how grateful those who are able to have respite are and also the difficulties they face and will continue to face with our current system in place.

Please take a look at other options:  in-home or facility based are not the only options available.  Many more could access respite if DDD partnered with schools, community centers, city park and county park departments.  The Seattle Parks and Recreation Specialized program is the program that I am most familiar with.  This program has been the best respite for our son – not only providing stable, reliable care with experienced providers in working with the DD population but they have provided many group activities, experiences and outings that we would never have had the energy to do.

With this center-based or activity based respite  (although it was not paid for by respite hours – we paid for it) was the best option for not only our son but our family.   Specialized Programs also offers day camps and overnight camps every summer.  Every year we see staff members return to take part in these events.   It would be wonderful to develop more programs such as this to provide stable respite care with trained providers for our most vulnerable populations.

By utilizing a center based respite we could pay the providers more than minimum wage which would add to provider stability,  have transportation to and/or from school for after school respite, provide respite right in the community, provide meaningful activities, have staff support (thereby not relying on one person to show up at your house – we have all experienced the unreliability of this situation which only adds to the family’s stress) and there are more eyes on everyone to help with prevention of negligent care.

By sharing resources and pooling resource the resources will go much further and benefit many more by making these services accessible.

 

 

Integrity – legislation passed based on false information

Our state saw some devastating legislation passed in 2011 in Senate Bill 5459:

  • One man died from negligence – there was laundry detergent stored in a milk carton, left on the counter and this man, who had been moved out of his home at Frances Haddon Morgan Center to a “community” home drank it and consequently died.  This man had a known disability of PICA (eating non-food items) but regardless of that, the fact that a non-food item had been stored in a food container is negligence – not accident.   I can only imagine the pain and suffering this man experienced in the few weeks between the time he drank this and when he eventually died.  He suffered immensely.  Yet does anyone care?  There were no charges filed.  If this had occurred in a day care center I can assure you there would have been charges filed but because this man had a developmental disability and the state was his guardian, there is no one person to watch out for him and advocate on his behalf.  
  • Our state has passed a law which discriminates against our youth with developmental disabilities.  Youth with high support needs who could be cared for safely and appropriately in one of our remaining residential habailitation centers are no longer able to access those services.  The only option left is crisis hospitalization or jail.  Is this progress?

What is also very disturbing is that this legislation was passed based on false information which was stated as “facts”.  These “facts” are not supported by the data from which they were drawn but the legislator who sponsored this bill chose to ignore any information that he found “uncomfortable”.  Others, when questioned about the supposed facts told me that they say no benefit in reviewing the questions I raised because the state did the research and  wondered why I would even question what the state provided.  This is they type of “leadership” we have.  This is frightening.

It’s time to pull their heads out of the sand, face the uncomfortable issues and address the questions.  Until this happens and there is a real dialogue, there will not be progress.

I have written to the Research and Data Analysis Division of the Department of Social and Health Services asking them to review the “research” report which was used extensively in this damaging legislation.  I have written to the Developmental Disabilities Service Task Force raising critical questions that need to be addressed.  I am hoping to engage in some real discussions which will tackle real issues and facts.

DD Task Force Committee wrap up

RDA integrity attachment

RDA Integrity attachment

FHMC Quality Assurance Report to Legislature

Caregifted – getaways for exhausted caregivers

Undersung

Today I learned of this wonderful program called Caregifted.  Here is the story of one exhausted mom who was able to benefit from this program – Free Vacations for Exhausted Caregiver.

Currently I am doing research on family quality of life.   When families are given no choice, when supports are taken away, when families are forced into isolation and become invisible because of their efforts to care for their adult children with complex needs, families fall apart.  We need to support the family in order to support the individual.  There are countless families who seem to disappear, they cannot work, they do not socialize, the lose touch with family and friends  and their life is defined by their child.  These families need respite and support.

Even a few hours a week which could be relied upon by a trained caregiver would be enough for some to just relax, get away  and give them energy to feel alive and part of the community again.  Why isn’t this happening?  Why do families have to go to battle to have minimal, if any, support?

Inclusion is a delusion without support.  Policymakers are forcing families into ruin by taking away choice and also denying these families support they need to survive.   Our children with complex needs, both behavior and medical, do not grow out of these needs, they become invisible as they grow up and become isolated, with their families.   There are very few  supports in our communities able to manage a grown adult with the emotional, physical  and developmental behaviors of a toddler.  If there is support is that support available when and where the family needs it?

Research in the past couple of years (Journal of Intellectual Disability Research, Journal of Intellectual & Developmental Disability, Center for Health Care Strategies, Inc.,British Journal of Learning Disabilities to name a few journals with recent published research) is starting to look at family quality of life and congregate care.  It is becoming more clear, especially for those with complex behavioral and medical needs, the person with the ID/DD and their family may do better, be happier and have a higher quality of life (both family and individual) when they are able to live in a supportive community of congregate type care.

Back to Caregifted – I believe this is truly a wonderful program. The one unfortunate caveat is that a prerequisite of applying is that applicants must have trustworthy caregivers available to care for their child to have a vacation.   That is part of the problem – where do families get this?

Please view the trailer for the documentary Undersung

Respite, Short Term (90 days or less) and Crisis Housing at RHCs in 2010

If our state consolidates or closes our RHCs where are these folks who needed respite care, short term evaluations or crisis housing going to go?  We do not have adequate crisis care for our DD/ID population as it is.

This chart is quite informative indicating the high usage of respite beds, evaluations and crisis housing in our RHCs.  We cannot afford to minimize these services.

Residential Services for Persons with
Developmental Disabilities:
Status and Trends Through 2010

Respite Revamp

In light of the devastating cuts proposed by Governor Gregoire, I will be posting ideas with innovative programs which are aimed at improving services and cutting costs.

It needs to be made clear to everyone that the costs and services attributed to the Home and Community Based Services are only “allowed” services.  This does not mean that everyone on the waiver has services.  Everything must be approved and DDD tends to deny most requests for allowed services.  When the “averages” are reported by DDD, they are extremely misleading.

My next post after this one on respite will address the HCBS waivers, what they entail, how many people actually receive services and the cost range for a variety of services.

Regarding respite:

Respite is one of those “allowed” services – yet I know very few people who actually received respite.  Our family for instance was in crisis for 3 years yet our son NEVER received any respite.  He was hospitalized instead.  I make these recommendations based on our own experience and from conversations that I have had with others in the community.  I can only speak of programs that I am familiar with and build from there.

The Seattle Parks and Recreation Department has a Specialized Programs division.  This program has been the absolute best program for our son and family.  If more programs such as this were available and people could use this approach for respite, it would serve more people, be more reliable and cost less than the current programs.

Please see Respite Revamp for my ideas.