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!

 

 

 

 

 

 

 

King County DD Wrap up for The Arc of King County Legislative Forum 2014

Letter to King County Legislators – December, 2014  (letter sent as a wrap up after watching the forum on TVW)

Thank you very much for attending the King County Legislative Forum on November 24, 2014. I was unable to attend and present some information regarding critical needs and access to services for many in our communities but do appreciate the opportunity to share the information with you at this time.

With Governor Inslee’s budget proposal it is clear that we will again be looking at more cuts to services for people with Intellectual/developmental disabilities. It is critical to have accurate information regarding community care, respite, crisis care and cost of care in order to make informed decisions.

What is most concerning to me is that facts are not being shared regarding access to and cost of care – particularly for the much needed respite and crisis care. I have gathered the information below in hopes of sharing some solutions to the problem. You heard some heart wrenching stories, particularly from Janice Lawrence and Laura Jorgenson regarding lack of respite and crisis care. My family, too, has experienced these issues – my son faced jail as the only option left for “care” as a 14 year old with profound intellectual and developmental disabilities. Multiple and prolonged hospitalizations were our crisis care until the denial of services was able to be appealed and he was admitted and stabilized at a Residential Habilitation Center (RHC). I understand the agony of these families in trying to secure appropriate care for their children and I work hard to advocate for this care.

You may recall in 2011 our state passed 2SSB 5459. There was quite a bit of controversy regarding this bill for several reasons – mainly closing of the Frances Haddon Morgan Center (FHMC) based on “cost savings” which never materialized and a state law which goes directly against Centers for Medicaid and Medicare Services admission of eligible clients into the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) or the Residential Habilitation Centers (RHCs). Washington State passed a law prohibiting those under 21 from admission to the RHC, regardless of choice and eligibility requirements being met.

The plan was to open up several crisis care centers for youth throughout the state. This plan was not fulfilled – again for several reasons but mainly because there was NO cost savings in closing FHMC from which these crisis care centers were to be funded.

Developmental Disabilities Administration was able to secure one home in Lakewood which can care for only 3 youth at a time. Since opening this Crisis Care Center (you heard one mother, Janice Laurence, talk about her son’s utilization of this center) in December 2012, 12 youth have been able to access these services. Of those 12, only one was able to return to the family home – all others either went to an RHC or a licensed residential home for youth. The daily cost of care in the Lakewood Crisis Stabilization is $1,165.

Frances Haddon Morgan Center (which today sits empty and unused) was able to care for about 22 respite clients per month for a cost of at a daily rate of $541 (federal and state costs combined) – clearly, utilizing the RHC for much needed respite was not only more cost-effective but much more accessible to our communities in need.

Data taken from the Executive Management Information System also clearly indicates how our RHCs serve those in our communities throughout our state. We often hear about the number of “permanent” residents in the RHCs but rarely hear about the much larger numbers of community residents who receive much needed crisis care and respite care. The community members served in our RHCs are more numerous than the numbers of permanent residents served in the RHCs. Also, the RHCs can provide this expert and comprehensive care at 46% of the cost for similar care at the Crisis Stabilization Center in Lakewood.

It only makes sense to continue to utilize the facilities we have and use them to capacity to best serve our communities in need. Closing or consolidating our RHCs is not the answer as evidenced by the wasteful “experiment” we have experienced due to passage of 2SSB 5456.

number of community members who access respite services

Average Daily Cost of Care for Respite

References:

Data received from the Department of Social and Health Services, Executive Management Information System with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions

Report to the Legislature – December 5, 2011

TVW.org 25th Annual King County Legislative Forum sponsored by King County DD and The Arc of King County

http://54.185.64.84/index.php?option=com_tvwplayer&eventID=2014110041

Rule changes to serve “the unserved”

rule making

 

Washington State Department of Social and Health Services and the Developmental Disabilities Administration (DDA) has posted immediate rule changes to increase the capacity of families enrolled in the Individual Family Support Program (IFS).  The reason behind this change is to “enable families to continue caring for their family members in their own homes and help stabilize families and individuals who are experiencing increased caregiving stress and crisis by providing respite from their caregiving duties.” I wholeheartedly support the idea behind this rule  change but also understand that this is an attempt of too little, too late and does not even address the real issue.

DDA states that the families receiving funds at this time are not utilizing their full “awards”.  DDA reports that only 55% of the IFS funds were used for respite and that  only 8% of the total number of families have used 81-100% of their awards.  (see attached for full explanation and percentage of funds utilized) WSR 13-17-062 Rule Change for IFS

It is extremely unfortunate for our families in need that the right question is not being asked and therefore, the solution DDA proposes will not address the problem.

The right question is – When you have families in need and they are awarded funds for services which would help relieve some of their crisis, why are they not using the funds provided?

Asking this question might give some answers to the problem.   DDA skipped this important question in determining a solution. DDA has concluded that since these families are not using the funds, they don’t need them and so DDA has decided to reduce the award and give the unused portion to other families in need.  On the surface, this is a logical solution, but again, it is not the answer to the question that needed to be asked.

The real problem is that our state has put a limit on the number of caregiving agencies families are allowed to use with these funds. These contracts are only opened up every 3 years so no matter how much money is awarded,  we do not have caregivers who the state will allow these families to use these funds for.  We do have caregivers available, but since the state has closed their contracts, these families in crisis can not access the use of these qualified caregivers.

I know this for several reasons – as a family who had been awarded funds for respite and not being able to hire a contracted caregiver I was well aware of the situation in the family.   The funds were useless without a caregiver to use them for.  In no way did this mean that we did not need a caregiver  – it meant that there were no qualified, contracted caregivers available.  This not only drove us into deeper crisis.

Now I work for a Home Health Care Agency.  We are licensed, bonded, run extensive background checks on our employees and all caregivers are certified nursing assistants who are supervised by a registered nurse.  I was excited to work for this locally owned and operated agency for several reasons  – one of which was that I could be part of the solution (or so I thought) to the caregiving crisis experienced by our families.

What I found out was that DDA contracts  (although supposedly the waivers are participant driven with respect to choice of providers) were not available.  We were informed that Roads to Community Living, COPES and the New Freedom waiver had sufficient caregivers to serve their clients.  We were denied a contract with the Health Care Authority based on a WAC which pertained to agencies which had their contracts terminated ( given this was our first application this WAC did not even pertain to our agency).  We still have not had an answer to our inquiries and are bounced between various people – no one being able to give accurate information.

 

No wonder our families are in crisis – the Department which is there to help them and navigate them through crisis does does not know their own rules, policies and how to connect a quality care agency to those in need.

So, DDA has a long way to go in trying to solve this problem.  Given that they do not even know the questions to ask to investigate what the problem is and make up solutions to non-existent problems, there is little hope for improvement.