"Everyone belongs" - Inclusion defined

 

In our survey to the community asking about disability supports, we asked: What does inclusion mean to you?

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Your responses follow. You can still take the surveys, and share your thoughts, here:

• Survey: DD Long-Term Supports, https://forms.gle/rRiWBMeLxkpDEJc88
  

• Survey: Early Learning and K-12 Education, https://forms.gle/7jJ2L18WuCScBv5D9

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We will use your feedback to share with leaders and boost awareness of developmental disability

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Inclusion is ... (Responses from community survey on DD long-term supports)

"The freedom to go out into the community with proper supervision to engage in 'normal' activities."

"Equitable opportunities for *all* to have meaningful lives, as they so choose. It is representation, having a voice, and being seen. It is ease of access, the dismantling of systemic barriers, and a world in which no one is an afterthought."

"Access and privileges that are granted to nondisabled."

"Equity in participation in community life."

"To be included in and given same rights and benefits as those who does not have different abilities."

"Everyone is invited, everyone feels welcome, AND no one experiences a barrier to participation."

"School. Work. Specialized Programs. Health. Mental Supports. Family."

"All individuals are able to participate in all aspects of life they desire."

"That I am treated like everyone else. I’m treated as a person first before my disability."

"Being included into the community, being able to participate like everyone else."

"Ability to go freely in community."

"Support to be included in every aspect of the community; not feeling excluded or unwelcome."

"To me it means the person has individual choices about their lives and the supports and services to ensure that person can participate and live how they choose."

"It means that people with DD can choose where they want to go, where they want to live, who they want to spend social time with, who they want to do activities with and that nobody can restrict their choice."

"Acceptance. Student receiving enough supports to make education accessible to them alongside their non disabled peers."

Everyone gets the same opportunity.

Being a valued member of the community who has opportunity to effectively contribute to the overall wellbeing of self, others and the community as a whole.

The ability for my son to be out in public and engage with people who don't have differences.

Disability exists because we don't recognize and accommodate fellow humans.

Being independent.

A community where all are accepted without regard to ability, or skin color or any other difference.

Support for participation in any activity supported with federal, state, and local dollars (i.e. library, city and county events, access for physical disabilities, shorter queues).

Not being excluded for any reason.

Accepting and allowing differences.

A full life — safe housing, employment, recreation— lived in the community. Acceptance and support.

That my son is included in all areas of the human experience and society. That his needs are centered and not an after thought or not included at all.

Adapt community policies to provide living and employment supports to allow all individuals to fully participate within their communities.

That my son is included in all areas of the human experience and society. That his needs are centered and not an after thought or not included at all.

Ability to participate in daily activities enjoyed by those without disabilities.

Living a life where my son knows he is of equal value and has equal opportunity to live, work, and recreate in his community.

Everyone belongs to our society.

That our communities and the institutions that serve them are set up according to principles of universal design in a way that provides people of all abilities with full access and encourages their full and equitable participation in the community 

The opportunity for individuals with disabilities to participate in community activities that they are reasonably able to and desire, with reasonable accommodation and support provided by public and private organizations and monies. This includes not only activities but medical and mental health support so that individuals with disabilities are able to lives that are physically and mentally healthy.

They shall have high self esteem and recognize and be recognized for who they are and their contributions. Education for the public in general as well as service providers. Public/private partnership to achieve these goals.

Equality and accessibility.

It means I can work, pay taxes, pay rent and learn to live independently.

Inclusion mean having activities that are welcoming for all people and universally designed programs and spaces that remove barriers to participation.

Inclusion means not missing out on the riches of life, in community, because of our disabilities.

(Responses as of August 24, 2020.)

Follow up: Cuts cause crisis

Resources, and a few more details

This is a follow-up to an online discussion and materials posted earlier. There are cuts being considered by the governor that would take away long-term Medicaid support for thousands and permanently shrink the state's caseload by making it harder to qualify for services.

These include cuts to services administered through the Developmental Disabilities Administration (DDA) and the Aging and Long-Term Support Administration (ALTSA).

At this stage, there are two actions you should take.

1. Learn about the situation and alert others who could lose their long-term support

• Many people still may not be aware of what's at stake. As of last July, the DDA counted 6,474 children and 6,173 adults in King County as clients; 9,362 are getting a paid service, while 3,284 are on the No Paid Services list. We have not reached anywhere near those numbers, yet, through our communications. Please, share resources
  

2. Contact your state legislators and the governor

• Tell them what loss of service (or continued denial of service) would mean to you
  
• For those of you who will be electing new state representatives, contact the candidates
• See Resources to Engage, below. The easiest way is to sign up with The Arc of Washington's Action Center
  

WHAT'S HAPPENED SO FAR: More than 50 people in our community gathered on Zoom recently for a Civics Monday discussion on proposed cuts to Medicaid long-term support. Another 1,000 or so have been tracking the situation through our online communications. Conversations have begun about how to connect with decision-makers.

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Budget details - Forecast is worse

• State revenue projection for 2019–21 lowered by nearly $4.5 billion

This means the state does not have the money to pay for the current budget. This is worse than the situation just last week, when the shortfall was estimated to be $2 billion to $3 billion. For people with intellectual and developmental disabilities, this means the 14,089 people on the No Paid Services list will continue to go without services; and the 1,069 who have a waiver but were denied support due to capacity will continue to go under-served and risk crisis. It also means thousands who have services are at risk of being cut off, permanently.

• State agency Fiscal Year 2021 savings options

Knowing there would be a shortfall, the governor asked the departments he oversees to share cost-saving options. You can find the proposals on the web page linked to, above. We gave an overview of the DDA and ALTSA plans here.

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Plans from departments that people with I/DD most interact with

• Department of Social and Health Services (DSHS) – Includes the Developmental Disabilities Administration; Aging and Long-Term Support Administration, Division of Vocational Rehabilitation, and the Behavior Health Administration
  
• Health Care Authority Medical Assistance and Health Benefits Exchange
• Department of Children, Youth, and Families
• Commerce - Housing and Essential Needs (HEN) and other critical supports are channeled through Commerce

We encourage you to review the different cost-saving proposals so you can consider how they might affect you or a loved one. Changing eligibility for care is not the only proposal we are concerned about; but it is the one we are most alarmed and disturbed by.

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What we know about changing eligibility requirements

Both the DDA and ALTSA proposals mean fewer people would qualify and receive long-term support. The DDA is projecting several thousand would lose services.

It also means that going forward a significantly smaller pool of people would qualify for habilitative support, personal care, or respite, and thus likely increase use of emergency services as individuals and families fall into crisis.

• Habilitative support is a service that helps you keep, learn, or improve skills and functioning needed for daily living. Speech, occupational and other therapies are all examples of habilitative supports. So is employment support
  
  
• Personal care includes assistance with dressing, feeding, washing and toileting, as well as advice, encouragement and emotional and psychological support
  
  
• Respite services offer relief to a person's family caregiver; often respite doubles as access to day programs, including stimulating arts and recreational opportunities

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Background

Most services provided by the DDA are funded though Medicaid home- and community-based services (HCBS) waivers. The waivers are designed for specific groups. The “waiver” involved is an agreement to receive services in a home or community setting, as opposed to an institutional or facility setting. About 99 percent of the state's DDA clients are supported in the community.

The current DDA waivers include:
•    Individual and Family Services Waiver
•    Basic-Plus Waiver
•    Core Waiver
•    Children’s Intensive In-home Behavioral Supports Waiver
•    Community Protection Waiver

In order to qualify for an HCBS waiver administrated through the DDA, a person with an intellectual or developmental disability must meet “ICF/DD Level of Care” as defined in WAC 388.828.4400 (for adults) and WAC 388.828.3040 (for children).

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What would change

The DDA is proposing to change the Washington Administrative Code (WAC) so that the definition of ICF/DD Level of Care is tighter. ICF/DD is an acronym for Intermediate Care Facility/Developmental Disabilities. Washington has several ICF/DDs housed in Residential Habilitation Centers, including Fircrest in Shoreline, which includes both an ICF/DD and a nursing care facility.

Because there is a complex algorithm attached to the waiver assessment, the DDA says it cannot explain exactly what would change, just that it would become harder to meet the ICF/DD Level of Care criteria.

The DDA projects that several thousand clients would lose their supports. This applies across all the DDA waivers and would impact individuals in a range of living environments, including living with family members, using community-based residential programs (e.g. Supported Living and Adult Family Homes), or residing in Residential Habilitation Centers.

Separately, the Aging and Long-Term Support Administration (ALTSA) has also put forward reducing eligibility as its main cost-cutting suggestion. Many people with I/DD receive supports through ALTSA.

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No legislative action required

The DDA confirmed that changing the WAC does not require legislation. The eligibility change can be made through an administrative rule change. For matters of civic engagement, this means less public scrutiny and no vote by your elected leaders. The public can weigh in, but the secretary of DSHS – a governor appointee – would make decisions about eligibility and who is no longer deemed vulnerable enough to receive long-term support.

Ultimately, the decision to do far less for people with intellectual and developmental disabilities is the governor’s, through his administrative staff, unless the legislature chooses to intervene with a policy change to the Revised Code of Washington, or make a funding change.

If the proposal to change eligibility is approved, the DDA projects changes could take effect January 2021. The state legislature does not convene for its next general session until January 11, 2021. So this change could happen before the legislature re-convenes.


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Did you know?

People with intellectual and developmental disabilities are four times more likely to contract COVID-19, and twice as likely to die from it. This article looks at a recent study. Now is an especially difficult time to cut support.

People with cognitive and behavioral disabilities face deepest poverty in Washington. 17 percent are in deep poverty; 32% are in poverty or deep poverty; and 54% are low income, in poverty or in deep poverty. (Source: DSHS/Economic Services Administration Analysis of 5-Year American Community Survey data 2013-2017. See page 10 of 10-year plan, Jan 2020, Poverty Reduction Work Group)

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Resources to engage:

ACTION CENTER: We are encouraging people to contact their state legislators. The Arc of Washington has an action alert center. If you are interested, you can access it here:

• https://arcwa.org/action-center/
  

There is a petition to the governor posted, as well as an action alert for state legislators.


CONNECT DIRECTLY: Or, you can email your legislators directly.
You can find your district number and state representatives and senators here:

• https://app.leg.wa.gov/DistrictFinder/

1. Enter address; your legislative district number and the names of your state reps will come up
2. Click on the name of a legislator to get contact info for them
   
   

CONTACT CANDIDATES FOR OFFICE: The Arc - Washington State has a list of every candidate, with contact information.

• Click here for The Arc's 2020 Elections resource page

• If you don't know your state legislative district, use the district finder tool
  
  

TALKING POINTS-PLUS:

• Click here for a Developmental Disabilities Budget Crisis Advocacy Toolkit, assembled by advocates from across the state

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Resources to share or learn from:

• Plain talk explanation of the budget situation

• Overview of proposed cuts and budget timeline (This links to another post in our Voice blog)
  
  

A virtual advocacy day: The state Developmental Disabilities Council, Self Advocates in Leadership (SAIL), and The Arc – Washington State cohosted a recent Zoom meeting that included a Q&A with Bryce Anderson of the Office of Financial Management.

• Tape of the meeting
• Slides shown during the meeting

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To wrap up:

This is a lot to take in. Mainly:

• The threat of cuts is real
• The cuts would be dire to people with intellectual and developmental disabilities and their families
  
• You should keep informed (we will do our best to keep you up to date)
• Please contact your legislators and the governor. Tell them what loss of services means to you
• We can share the numbers and big picture stuff; only YOU have the power of your story.
  

DD cuts would be devastating

When asked for options, DSHS included changing eligibility for long-term supports

People with cognitive and behavior disabilities face the deepest poverty in the state, and people with disabilities that prevent them from walking or moving around aren’t far behind. These folks make up the core of people with developmental disabilities. For those who rely on them, long-term services and supports are so much more than safety and security:

·       Personal care literally means being able to get out of bed

·       Residential support means access to a home

·       Employment support means access to jobs

Without supports, those facing deepest poverty could lose everything.

So why is there talk about cutting the lifeline for people with developmental disabilities? Why is there a petition circulating to the governor and state legislators?

Office of Financial Management exercise

First, there is no decision – yet – to cut services. But the situation is dire. In response to plunging sales tax revenue and an expected gap in the current budget of $2 to $3 billion, the state is doing some “what if exercises.” As in, what are the options if the state Developmental Disabilities Administration (DDA) had to cut 15 percent of its budget?

All the state agencies did this exercise. The Office of Financial Management (OFM) will be posting agency responses online on Monday, June 8.

The options shared that affect people with disabilities are devastating, including one to further restrict eligibility for long-term services through the state Developmental Disability Administration (DDA), part of the Department of Social and Health Services. This proposal involves more than limiting new enrollment – it would kick people off services they rely on.

• People who face deepest poverty could literally lose the ability to get out of bed, to bathe, or toilet. This could land them in the hospital
• People cared for by aging parents could lose the opportunity to move into an Adult Family Home or get community residential supports. In the event of illness or death of a parent, they could face homelessness
• Families who rely on behavior supports to help their loved one stabilize could spiral into deeper crisis

Other actions suggested are noted, below.

At 41^st in spending, Washington state is already near the bottom when it comes to investing in Medicaid community supports for people with intellectual and developmental disabilities. 

Too many of our loved ones and their families are already in crisis. 

Washington is already sending youth out of state because our state doesn’t offer appropriate supports here. 

Individuals are already being abandoned in hospitals because caregivers can no longer support them.

Families already hear, “I’m sorry, but we can’t do anything for you.”

At current funding levels, the DDA only offers support to about 30 percent of Washington residents who meet the federal definition of developmental disability. That is:

• Severe and chronic disabilities that start in childhood, continue indefinitely, and result in substantial functional limitations in 3 or more areas of major life activity

According to federal health survey data, this represents 1.58 percent of the population, or about 119,000 people statewide. The DDA provides services to about 35,000 and has another 15,000 on a "no paid services" list.

Next steps:

Early last week, 27 organizations supporting or advocating for people with developmental disabilities and their families sent a statement of guiding values for budget reductions to the state legislature’s lead budget writers. You can read it here.

Over the next 10 months, The Arc of King County will provide information about the budget process, run advocacy workshops, and share opportunities to engage. We are working alongside The Arc of Washington, the state Developmental Disability Council, and other partners in the statewide Community Advocacy Coalition to educate leaders about the impacts of cuts and crisis. We will also work alongside partners in other coalitions to monitor proposals that would cut K-12 education, early learning and childcare, and housing.

So far, proposals that most alarm us are ones from DDA and the Aging and Long-Term Support Administration (ALTSA), which also serves many people with developmental disabilities. Because people with disabilities are over-represented in food and housing instability, foster care and justice systems, the DD community could be disproportionately impacted across agencies.

This week, the Office of Financial Management will post details of what each agency sent in for the 15 percent cut exercise. 

Some ideas would require legislative action to implement; others might require labor agreements; and still others rulemaking. Rulemaking is a process where agencies post proposed changes to the Washington Administrative Code, hold a public hearing, and then issue a decision. No legislative action is needed in rulemaking.

It’s important to note that OFM's budget cutting exercise is the start of a process that will last through next spring, and possibly longer if the legislature cannot come to an agreement during its regular session. In the Great Recession, the legislature considered both cuts and new sources of revenue, but relied heavily on cuts.

Here is a general timeline:

• Revenue forecast June 17: The state will know then whether immediate cuts are necessary
  
• Supplemental budget: If needed, the state will draft and vote on a supplemental budget for current spending. The budget is voted on by the state legislature; the governor has veto power. If a supplemental budget is needed, the legislature could convene for a special session. Or they could make budget adjustments at the start of the next general session.
  
• Next biennium budget: Over the summer, agencies will work on budget requests for the 2021-22 state budget. They submit those to the governor in September.
  
• November 2020 revenue and caseload forecast: The governor’s staff builds a budget proposal.
  
• January 2021: The state legislature convenes. The budget writing committees will host public hearings on the governor’s plan, but the actual budget will be passed by the legislature; the governor has veto authority
  
• February/March 2021: Quarterly revenue and caseload forecasts come out and inform the legislature’s budget proposal
  
• April 2021: The legislature passes its budget (in theory)
  
• April/May 2021: The Office of Financial Management reviews; the governor signs or vetoes
  
• June/July 2021: Agencies submit detailed spending plans. The new biennial budget takes effect July 1, 2021

Options put forth

Unfortunately, we don't have any more detail than what is provided here. This information came from letters DSHS administrators shared with the community. When we know more, we will share out. 

NEW! Cuts proposed by DSHS (Opens spread sheet)
NEW! Cost savings proposed by all departments (Opens webpage)

DDA options  

1. Staffing costs: Options include unpaid furlough days. ($8.3M GF-S; $14.8M total funds)
   
2. Delay expansion or eliminate client service programs: Includes eliminating the Community Crisis Stabilization and Adult Family Home Meaningful Day programs and reducing Medicaid waiver capacity. ($26.6M GF-S; $48.8M Total Funds)
   
3. Residential Habilitation Center cuts: Options include reducing staff positions, consolidating cottages and closing Rainier School entirely. Closing Rainier and transitioning all the clients actually costs more in FY21, but leads to savings in the next biennium. ($5.5M GF-S; $11.5M Total Funds)
   
4. Provider Rates: Savings is achieved by a rate cut for in-home providers, Adult Residential Care, Adult Family Homes, and employment and community integration providers capturing the additional 6.2 percent of enhanced Medicaid matching funds from July through September as savings. ($24.2M GF-S; $33.4M total funds)
   
5. Client Eligibility: Changing the level of ICF/IID in Washington’s Medicaid state plan to increase functional eligibility requirements will end services for thousands of Medicaid clients in home and community residential settings and RHCs; and a corresponding reduction of DDA staff. ($75M.3 GF-S; $150.5M total funds)

ALTSA options 

1. Cut client eligibility: Elimination of the optional Medicaid Personal Care (MPC) state plan program. Increasing the level of functional need required to meet Nursing Facility Level of Care in Washington’s Medicaid state plan and waivers will decrease the number of Medicaid clients in home and community residential settings by approximately 20,500 people; nursing home clients by approximately 680 people; and a corresponding reduction of a significant number of ALTSA staff and AAA full-time equivalent positions. ($129.8M GF-S; $282.3M total funds)
   
2. Eliminate client service programs: Includes eliminating state funded non-citizens and Senior Drug Education programs, Medicaid funded Adult Day Health and Day Care services, reducing Adult Family Home Meaningful Day programs. ($15.5M GF-S)
   
3. Provide rental subsidies to assist nursing home clients who request transitions: To assist clients in nursing homes to transition to their own residence with in-home care supports, ALTSA proposes paying for rental subsidies so that clients can afford to relocate to their own home. Even though the subsidy is state-only funding, the cost is still less than paying half of a nursing home rate, thus saving money. ($1.0M GF-S)
   
   
4. Cut provider rates: Savings is achieved by assuming an across–the-board three percent rate reduction for all ALTSA providers, including those who collectively bargain wages and benefits and capturing the additional 6.2 percent of Medicaid matching from July through September as savings. ($60.6M GF-S; $9.4M total funds)
   
5. Staffing costs: Including unpaid furlough days. ($15.0M GF-S; $25.8M Total Funds)

High alert

While these cuts have not been ordered, advocates are on high alert. Equal is not equitable when it comes to reducing state services. Cuts to community supports cause crisis - for individuals and their families. The Arc of Washington is circulating a petition to the governor and state legislators. You can sign it here